Peaks and Valleys

School Update

2012-01-26T00:35:00.009-05:00

Its hard to have a kid, any kid, at school when you work full time, with limited flexibility, in a different state. I struggle with feeling I'm not involved enough with Ryan's therapists and teacher as I'm not there to pick him up or drop him off. Impromptu talks about how hes doing, in the corridor, at the end of the day are unheard of. So I scheduled a meeting with his teacher to see how things are going, as hes been at school now over 6 months. Ohh, the torture of it! A meeting with any professional to discuss Ryan's "progress" always ups the anxiety level with me but I tried to pull myself together and remembered that I had called this meeting, basically to just get an idea of what hes doing well in, what hes struggling with and what i can do at home to help him.

I must admit Ryan has the best teacher ever. Shes easy to talk to, so positive and has a genuine love for her kids. On a whole Ryan's doing very well in her classroom. He loves playing with the other kids and is highly social. The classroom is small and has 7 kids and on any given day nearly as many adults so its pretty cramped. Ryan struggles with performing what he knows in the group setting but she can see a totally different child in a one on one setting in a quiet room. I think under that easy going exterior hes quite a sensitive, sensory aware little boy, and noise and distraction has always shut him down. One of the reasons we had to pull him out of daycare as he just slept the whole day due to over stimulation. Even as a young baby he performed much better on a one to one level. I was surprised to hear that his actually preschool knowledge is pretty close to typical (sorry have to say this one more time, these words came out of the mouth of an educator "pretty close to TYPICAL!!!" ) when working alone with his therapists, and he shows great strengths in matching, identifying etc etc. The struggle with Ryan is how to draw that knowledge from him in the "real" world and enhance his communication so he can show off his skills. Hes also still struggling with transitions pretty significantly and hes highly sensitive to noise, and disorder, yes we still hate with a passion anyone knocking down the blocks or taking the pieces out of a puzzle. They play "football" in adaptive PE and "tackle" the bollards. Miss E was telling me how Ryan crys when he sees the bollards being brought out as he knows someone is going to knock them down. Hes ok if you explain to him that there is no knocking them down today. My quirky boy. My homework is to work with him on more sensory type activities.

We talked in great length about ipad apps for communication and what they were using in the classroom that i can be insync with at home. She did say that hes responding very accurately and appropriately in circle time using his switch etc so that really made my heart swell that he was making some gains in the communication area. Rock on little man, I know you have so much to say, we just have to find a way to help you say it!

Miss E was also greatly concerned with Ryan's demeanor since he had the double pneumonia in December. She said hes really not back to being the same kid, hes very upset at activities he used to enjoy, exhibits alot of crying, and alot of fatigue. He also not eating as well and is showing alot of reflux. We are seeing the same changes at home, and I need to discuss this with his pediatrician to see if we can figure out whats going on.

I had the opportunity this weekend to meet with the mum of one of the little girls at Ryan's school from our town. She rides the bus with Ryan. Her mum wrote a book about her experiences with her daughter from her older sons point of view. Cute book that is available at Amazon.

Medical Update

2012-01-23T21:52:00.000-05:00

We've had quite a few drs appointments, tests, etc these past few weeks and finally got some results back
Firstly the GI dr called with the results to Ryan's upper endoscopy. Thankfully he doesn't have Eosinophilic Esophagitis but he does have reflux esophagitis as he has significant inflammation in his esophagus. We have doubled his reflux meds and if he doesn't seem to be getting relief from the increase we will talk about doing a gastric emptying scan to check for slow motility.

We had a follow up appointment with Ryan's pediatrician to check if all was ok after the hospital stay. He wants him to continue on pulmicort for a month and then redo the chest xray.

The results from our trip the Johns Hopkins are finally back in and ...... drum roll please ....... all are normal! I cant say I'm too surprised. To be honest I don't know what to feel, I don't know what to think. Although the dr at JH did the latest , greatest genetic tests on Ryan I had a feeling nothing would show up. I'm kind of annoyed i was right. That probably sounds a little weird if you haven't had a kid in the "undiagnosed" category but believe me, although you pray the tests never find anything, and what we are testing for at this point are some pretty awful diseases with no treatments, theres still a part of you that really really needs an answer. Of course alot of parents with kids with special needs after some time put testing on hold and come to a place of peace with being undiagnosed, but to get to that peace you have to find acceptance, and I'm just not there yet. I cant accept that medical science cant find a reason for Ryan's delays, and I don't know why my brain wont allow that. I guess its because the alternative might be that I did something to cause this. Intellectually I know that's probably not the case but its always something in the back of my mind. I guess in a way the search for answers might be rooted in a more selfish cause, in that it might let me off the hook somewhat although i truly know there was nothing I did on purpose to cause any of Ryan's delays. Theres also the other medical stuff going on with Ryan. A diagnosis could help us figure some of that stuff out. Give us an idea of what we are dealing with. A diagnosis might also actually help Ryan get the help he needs in terms out outside therapies and medical equipment that is not covered by our insurance company. Another reason why I cant give up looking, not yet anyway. So we will continue on and do the MRI and spinal tap.

The genetics counselor also mentioned how Ryan would be a candidate for Genome sequencing, basically a test that that looks at the complete breakdown of a persons DNA. Johns Hopkins are hoping to have this clinically available within their genetics department within the year.

In other "medical" news Ryan is struggling with the cold this winter far more than before. He regularly has a pale, colorless pallor and his hands are really cold more often than not, even when hes in the house. We have also noticed bluing around his lips and eyes quite occasionally. Its hard to tell what all this is from, probably a response to a whacky autonomic system but we are having to be really careful with the temperature of his environment this winter and unfortunately snow tubing with friends this weekend was out of the question although Ryan would probably have loved it.

What makes a Life?

2012-01-16T12:19:00.008-05:00

"Of all the forms of inequality, injustice in health care is the most shocking and inhumane." – Dr. Martin Luther King, Jr., in 1966

Racing around the blogosphere this week has been a story about a little girl named Amelia, and a torturous meeting her parents had with the Drs at Children's Hospital of Philadelphia about a kidney transplant their daughter might need in the future. All did not go as well as expected and the parents were basically told that because of "mental retardation" Amelia would not be eligible for a transplant! You can read more about her story and the meeting here:

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

If this angers you as much as it does me then you can sign the petition calling for CHOP to reconsider their decision about the transplant.

http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

How can one of the largest children's hospitals in the country show a blatant display of discrimination against individuals with cognitive disabilities. What makes a life worth saving? Does having a cognitive disability lessen your right to live? I think not! How can one quantify a good life, a purposeful life? When i read Amelia's story all i could think about was "there but for he grace of God go i" How dare a panel of drs presume that a child's quality of life is not enough. My son lives a full life, is it less important than another child's because he may be diagnosed with a cognitive impairment later in life. If i know one thing its that Ryan is meant to be here, he fought extraordinary odds to be here and fights to live in a world that is incredibly difficult for him every single day. He leads a full life, maybe fuller than most 3 year olds, he rides horses, travels, swims, plays with his dog, brings joy to all who meet him. He in many ways is just like a typical child and just as loved! Would drs on a panel say that he is not deemed worthy? I shudder at the thought! I pray the worth of my beautiful boy will never be questioned.

In honor of Martin Luther King day here are some words that are as valid now as when they were spoken in 1963.

"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."" MLK, 1963

Christmas Day

2011-12-25T13:19:00.002-05:00

After the worry of the previous week, Christmas day was wonderfully relaxing and peaceful, I didnt even stress finding cute pj's for Ryan to wear on Christmas morning. Just the 4 of us hanging out, eating far too much and enjoying our new toys, ipad and kindle (I dont think I would be able to pry Johns Kindle Fire from his cold dead fingers!)

T'was the week before Christmas .......

2011-12-24T17:21:00.000-05:00

..... and instead of packing up the car, and heading to Canada to spend a wonderful Christmas with family that we don't get to see often enough, we ended up in Hackensack Hospital. Monday Ryan came home from school very tired, cranky and full of the sniffles. Tuesday we kept him home from school and started nebulizer treatments for his cold, hoping to stay out of the ER. Our nanny worked late so JB and I could do some last minute shopping before heading to Canada. About an hour into our shopping we got a call from Anna to say she wasn't able to waken Ryan and he was running a temp of 103. He had been hovering between 99 and 101 all day with regular Tylenol. but the 103 temp was after an hour of of last Tylenol dose. JB and I quickly rushed home and off to the ER. Ryan was satting in the low 80's and his temp had now risen to 105.4! In normal Ryan fashion when he gets very sick he also turned a lovely shade of yellow although Drs don't seem to be concerned with this regular occurrence. A chest xray showed RSV and bilateral pneumonia and he was started on nebulizer treatments, Motrin, antibiotics and steroids and admitted to the pediatric floor.
The first night he had to have continuous O2 to keep his sats up and was started on fluids for dehydration. At this point he was refusing any liquids and sleeping non stop. He also wouldn't let go of John so JB ended up sleeping with Ryan on top of his chest all night. He said it was a form of extreme torture to have a 35lb boiling hot water bottle clinging to you all night while a regular parade of strangers came and went , poking and prodding, taking vitals and giving treatments.

The next day was more of the same, still spiking temps and needing O2 and fluids with continuous sleeping. He also had tachycardia and hyperreflexia, his body was continually twitching probably from the albuterol. The only nice thing about being inpatient around the holidays is you get loads of visitors bearing gifts. Unfortunately Ryan was too sleepy to appreciate Elmo was in the doorway.

His IV dislodged that day and flooded his arm, causing it to swell to about 4 times its regular size and his fingers to turn black! The below pic was taken the next day after the swelling had gone down significantly however you can still see it a little. Luckily the swelling didn't cause the skin to blister which was the Drs chief concern.

Day 3 and hes starting to wake up but still very sleepy and non responsive to toys. I think it might have some residual PTSD from Ryan's babyhood when his milestones came very slowly and I would spend hours willing him to reach out and touch something. I was starting to panic that he was having a serious regression when I couldn't get him interested in any of the toys at all. Although his temps were better controlled he was still showing dehydration on his blood results and refusing to drink anything. His heart rate was still very high even when his temps were down which was a little concerning. When he wasn't sleeping he was just lying in bed staring off into space. Heartbreaking to watch.

Day 4 and although still needing blow by O2 at times he starting to perk up and actually eat and drink a little.

Day 5 and we are waiting to be released.

We're outta here!!! Just in time for Santa!!!

Nonverbal

2011-12-20T02:10:00.006-05:00

I want to hear your sweet voice Ryan, I don't care which words you want to speak, Ive lowered my once grandiose expectations of wanted to hear mama before dada, no, now i just want to hear something, anything, just let me know that someday you will be able to talk to me. I know that it might not be in the typical fashion but just give me a little hope that some speech is a possibility. It scares me to death that you still don't babble. Yes, you make lots of noises, even lots of different noises and you "talk" to us with expression on your face as if you think we understand but my head knows that you're a long way from actual speech. My heart doesn't want to believe that. My head knows that you need to babble before you can actually form words, my heart doesn't want to believe that. I do think however that the increase ability of being able to chew more textures and move your mouth more is helping you to form a wider production of sounds.

I think its one of the hardest things to accept in this SN world, that your child may never talk, never speak, never strike up a conversation in the typical way. Not even because every mum wants to hear mummy, or i love you, but the struggle is more with simple things, like I'm cold, I'm hungry, I'm sick. We all now know the reason for Ryan's meltdown at Sesame Place last night, he was getting really really sick and he just couldn't tell us. Refusing to sit in his stroller and screaming, and crying were the only ways he knew to tell us something was seriously wrong. It breaks my heart to think he was struggling and we had no clue (although in our defense Ryan has started to throw a few tantrums lately which i think is normal development for his age coupled with the fact that hes getting more frustrated at not having a voice).

His receptive language is progressing really well, just the other day we were getting dressed and he picked up his blue sneakers, i said no not those ones, the white sneakers, and he put the blue ones down and gave me the white ones! Pretty cool, huh? His teacher in school believe hes understands everything so its hard to grasp that his expressive language is still at the same level it has been since he was 6 months old. What is stopping that little voice of his from coming out?

They have been using switches with him at school which Ive been against somewhat as i feel he may use them as a crutch and not progress with his talking but its time to really get serious about this. The boy needs to communicate with the world and frankly it doesn't really matter now in which form. I do however think the switch method is a little rudimentary for him so I'm really excited on how Ryan is going to take to the ipad. There are some really affordable communication apps out there that are much easier to navigate than the usually augmentative communication devices. I'm hoping that the ipad will be a way for Ryan to express to us his needs and at the same time facilitate more meaningful expressive communication. Still in the back of my mind I believe that once Ryan realises the reason for talking, his internal motivation will take over and he will start to talk. Hes always been this way, milestones need to make sense to him. We can only give him the tools to enable him be as successful in the speech area that his brain will let him be.

To end on an exciting note though Ryan is starting to point! Typical babies learn to point at 12 months. It is usually a precursor to actual speech so its a great sign that his want to communicate with us is growing as hes inviting us more and more into his world. So we will keep searching for all things that can help Ryan with his "talking", I refuse to let the world judge him on his ability to communicate.

A Very Furry Christmas

2011-12-18T02:10:00.000-05:00

We took Ryan back to Sesame Place for the "Very Furry Christmas" He loved it for the first hour and then things took a steep downward turn. He had a major meltdown and we had to high tail it out of there as nothing would pacify him. I think between the cold and the onset of some sickness (more on that in the next post) he had just had enough. We did get to see Santa though and Elmo and Bigbird but unfortunately due to our hasty exit we weren't able to pick up the photos.

It's beginning to look alot like Christmas ....

2011-12-16T14:59:00.000-05:00

Christmas in NYC

2011-12-15T14:20:00.013-05:00

Santa came for visit to the old barn down the road from our house. Ryan was excited to see the Man in red and "tell" him his Christmas wish list.

Later that evening we took a trip into NYC to see the Christmas tree. There's something really magical about Christmas in Manhattan!! Ryan had fun although the crowds seemed to distress him after a while.

Upper Endoscopy

2011-12-15T14:20:00.006-05:00

Ryan had his upper endoscopy today. By the time the appointment rolled around he was tried, hungry and really cranky. He would cry hysterically when anyone remotely medical looking at all came near him. The only thing to keep him calm was when i would quiz him on his colors in the waiting room. He perked up though when he was wheeled into the operating room and seemed very excited about all the lights and machines! He weathered the anaesthesia like a champ although it did take him over an hour and half to wake up but seeing he was past his nap he was probably just sleepy.
After the procedure the Dr handed me a lovely pic of the inside of his oesophagus and said she didn't think he has EE but took biopsy's to be sure. He does have significant inflammation though so we will have to really look at his reflux meds and his motility.

(yep, I left my camera skills at home that day!)

Doctors, Doctors, Doctors.

2011-12-07T14:30:00.007-05:00

GI
I don't know how I managed to schedule so many doctor appointments in the weeks leading up to Christmas! This week we had follow up with GI. Ryan is still having some significant breakthroughs with his reflux despite the increase in Prevacid dose which helped for a while and then leveled off once again. Due to his sensitivity to cows milk and the ongoing reflux his Dr wants to scope for eosinophilic esophagitis. Eosinophilic (ee-oh-sin-oh-fill-ick) esophagitis (EE or EoE) is an allergic inflammatory disorder affecting children and adults, EE is an abnormal immunological reaction to food, characterized by elevated eosinophils—a type of white blood cell—in the esophagus. When the body’s immune system attacks a substance, in this case an allergy-triggering food, eosinophils move into the area and release chemicals that can damage the tissue. When the body produces too many eosinophils, it can cause chronic inflammation and scarring of the esophagus. Ryan will be put under general anaesthesia and a scope will be inserted to view his esophagus and biopsy's will be taken for testing

ORTHOTIST
The same day we also met with Dr Jordan for orthotics. As mentioned before Ryan is having problems with his new orthotics and although i loathed the thought of driving 100 miles one way to Dr J and paying out of pocket for the pleasure of the appointment I felt it had to be done. Dr J agreed that the braces are not the best for Ryan, they are too tubular therefore giving no custom support to his calf's etc and the hinge was not helping his crouching when standing. He feels the hamstring tightness is getting tighter and agreed with the physiatrist that serial casting might be in Ryan's future but wanted to try a month in new braces to see if he can help his legs less invasivley. He did feel that left on its own the muscles will continue to get tighter due to how Ryan is using them to compensate for his weaknesses in other areas. So more moulds were taken of Ryan's legs and his new braces should be ready in January. Doesn't usually take that long but I'm waiting until the new year until my flex spending plan at work renews.

NEUROLOGY
2 days later we met with Ryan's neurologist. He had wanted to see us for a follow up and to discuss the MRI and spinal tap requested by Johns Hopkins. Not much new to tell only that he feels Ryan is still a "mirror baby" as he calls it, not too sure what that means but something to do with his alertness and use of his eyes to take in whats going on rather than use his muscles to explore. He feels this is important to get a true reading on the brain activity rather than going completely by black and white progress / test results. I guess another way of saying he feels Ryan has more going on than he can actually show us. (Or maybe he just likes us and wants to make me feel better).He wants to wait until the micro array is back from Johns Hopkins before proceeding with the MRI etc because based on those results he may want to add some tests to the spinal tap. I asked again about mito and once again he said its still on the table, but I personally don't feel a muscle biopsy is necessary at this point.

All things gut related

2011-11-30T14:47:00.011-05:00

"Follow your instincts, thats where true wisdom manifests itself" Oprah Winfrey

I eluded to meeting with Ryan's PT in the last post but things have been really bothering me about his afos. He was doing great with the walking a few months back, getting so strong walking holding hands and in his walker, cruising and pulling up to stand everywhere and now it seems hes doing less and less each day. I rarely come into the room and see him standing now. Its a real job to get him to do any walking in his walker. The major event during all this change, was getting the new afos. He was without afos for at least a month while we waited for the initial appointment and for them to be made, and then another 2 weeks while we were waiting on getting them fixed as they were causing huge blisters on his heels. Even when they were adjusted Ryan was showing no inclination to bear weight in them. He would go back to the noodle legs we haven't seen in years! They are hinged so I thought maybe he just feels really unstable but I feel i gave them a fair shot and things weren't getting any better. So I went back to his old afo's and hes been doing much better. Pulling to stand again and not fighting as much in the walker. The PT feels the new braces are fine but I'm tired of listening to professionals when my inner mommy voice is niggling at me. I'm going with my gut on this one and booked an appointment with his previous orthotist. Dr J's braces are unlike anyone has ever seen and he uses alot of carbon inserts etc that your don't see on regular braces but they seem to work well for Ryan. I only went to the other orthotics guy as Dr J is 80 miles from the house and I was trying to simplify my life. Of course the new braces will now come out of pocket to the tune of $2000 but I really feel these will be best for Ryan. Ive found that PTs are very wary of what they haven't seen before and I feel this is Ryan's school PT's hesitation with his old braces.

I found these really cute lunch boxes online from Bento and I'm on a mission to make Ryan's lunches more nutritious and interesting. Thankfully as hes now chewing much better and eating by himself we have many more choices on what he can take for lunch. I may even do some baking (shock!!!).

I also like the Dr Sears nibble tray for a take out tray and this lunch bag from Sugar Booger

Opthamology

2011-11-30T00:44:00.004-05:00

Today started really early. Ryan and I were up at 5, out of the house by 6 , for a 7.30am appointment, yep you read that right a 7.30am opthamology appointment. As the appointment is in a different state and i have to cross the notorious Tappanzee bridge so i had to leave plenty of time. After the appointment we rushed across state lines again and Ryan made it back to school for a 9am PT session. The PT was waiting for us and I got a chance to speak to her about the orthotics. She feels they are fine, I do not. Then back across state lines and the awful bridge to be in work for 10.15am. Yawn .......... is it home time yet?

The appointment went well, just a check up really. Patching seems to be working so we are to continue with that, but we may need to do the operation at a later date. Yuck.

Thankful

2011-11-24T10:37:00.008-05:00

Ive struggled with this post, with this holiday, with all the "I'm so thankful for.... " status' on Facebook. Ryan doesn't have any huge things happening at the moment, no "hes walking" or "hes talking" posts to write, which is kind of depressing for me (huge understatement). Actually Ive been struggling these last few weeks on how much progress Ryan has been making this year, or lack of progress to be exact. When I think back to a year ago on the outside there hasn't been much change but that has forced me to look much deeper, to think back to the little itty bitty in the hospital, and even further to the 2 scared adults that stood with arms wrapped around each other in the kitchen after being told there was possibly something wrong with their pregnancy. The same couple that promised each other that night that they would accept whatever God sent and together would get through this. We were scared and heartbroken during those months and prayed that Ryan would beat the impossible odds and make it to birth. I am so beyond thankful that he did!

As Ryan was eating his turkey dinner today all by himself it reminded me that I am truly thankful for him being able to eat at all. When he was in the hospital and tube fed, I couldn't get my head around the fact that he needed to be fed with a tube down his nose, what do you mean he cant eat, that's a basic human function, right? Ohhh, I had so much to learn hadn't I. I knew that sometimes legs didn't walk and lips didn't talk but eating?? The roller coaster ride of feeding was what i focused on when he was in the NICU, full of joy when he could take the tiny amount by mouth, and falling deeply when he had to be tube fed. Being able to be rid of the tube was his first real milestone. I am so Thankful for the smiles he gives and I could listen to his laugh all day. When he was 9, 10, 11, 12 weeks old I honestly thought the child would never smile ....... and then he finally did. I'm so thankful for head control. I will never take this one for granted. Ryan earned his stripes with this milestone and didn't gain complete control of his head until 14 months. When most children were running and talking, Ryan was mastering holding his head up, but we were off the starting blocks, and to me it all seemed downhill from there. Life eased up dramatically with that milestone most don't even notice. I don't take anything Ryan does for granted. The first 2 years of many illnesses and even more regression scares taught me that all could be lost in a second, I'm truly thankful for everything he does, I see tiny miracles in him every .... single ....day.

I am beyond thankful for all the little steps Ryan has taken these past few years, they let me know he will get to where he needs to get to in his own time, and in the meantime his life is a joyful one. I'm thankful hes so happy, easy going and full of love. I'm thankful for a husband that is still there every step of the way. A little boy came into our lives and changed that couple we once were so profoundly, he has taught us that God answers prayers in his own way, that he gives you the tools to handle the difficult stuff, puts people in your life when you need them most and that sometimes gifts and blessings come in a way you truly weren't expecting.

Happy Thanksgiving everyone, never forget there are many tiny little things to be thankful for each and every day.

No Hugging??

2011-11-06T11:59:00.000-05:00

NO HUGGING??

Ryan has always been a very lovable, happy child. He will give just about anyone a hug. Alot of servers in the restaurants we go to remember him as he gives his hugs away freely. JB tends to encourage this, I, on the other hand, struggle with it a little. Whether to tell him "no" or allow his free expression.

When at John Hopkins last week the Dr pointed out that a 3year old wanting to hug the Dr is not really typical. Really? Wow , what a revelation! (sarcastically said into myself).

At the diner the other day we were waiting for a table and a little boy with Down Syndrome was leaving. He made a bee line for Ryan and gave him a big hug. The dad had a really tired, worn out look on his face. I told him that Ryan also loved to hug everyone, and he answered "they make a good pair then" with a smile. "I can tell you are not from around here" he continued, "That makes me a little more comfortable, everyone is a little uptight in there" I wondered was the tried face from explaining over and over about his boys advances and sometimes them not being as welcomed as we had. After a few minutes Ryan broke free and turned round to hug me. The Dad put his hand on the boys shoulder and said "lets go Buddy" as if he had done this a 100 times before.

So the dilemma to me is whether we should allow Ryan to continue to reach out to everyone he meets, or to nip it in the bud while hes still young, or to try at least. These kids definitely don't come with a manual. Whereas it is more socially acceptable that Ryan doesn't spread his love so freely, but putting an end to it would mean missing out on some beautiful moments like this.

Stressful Week

2011-10-23T15:29:00.004-04:00

Its been so long since Ive written, I have dozens of half written posts that never seem to make it out of the draft area. Life just gets in the way of blogging some how. I was downloading pics onto the computer and finally decided to sit down and write a post before i leave to see Murphy. My poor horse has been neglected these past few weeks, and i feel bad as hes such a low maintenance animal and this week hes really needed my attention. He is off in the left hind, he injured his annular ligament there quite a few years ago but has always been 100% sound ever since, last weekend turned up lame. After 2 trips to the clinic (first time he got off the trailer was miraculously sound again, probably from adrenaline) and some ultrasounds he just has some swelling, no tears or lesions which is REALLY great news. Injuries to a horses protective sheath that wraps around the back legs' tendons are notoriously lengthy to heal so thankfully this wasn't the case like the vet first thought. He should be fine with some time off and gentle work. This week I also had a bit of a health scare myself which turned out to be nothing thankfully but it was a rough week in our house and the worry totally took the fun away from John and I's 10th wedding anniversary. The issue was probably something stress related, isn't everything? So Ive made a resolution to myself to eat healthier, get more exercise and generally take better care of myself. Its seems Ive let alot of that go for the last 3 years and it needs to stop. I tend to internalise stress and I need to find a way to let it out and move on. Yep, easier said than done, but stress does a number on ones body, well that and old age could also be a factor.
I finally got around to going through the mountain of mail and paperwork that has been piling up in our office. Not really because I wanted to but because i had too. I needed to find old drs reports and test results from all Ryan's specialists to send to John Hopkins in Maryland. Ryan has an appointment at the hypotonia clinic there next week. I'm not really suspecting that this appointment will reveal anything new but this doctor sees alot of hypotonic kids so he may have something to add in terms of a diagnosis. As time passes i get used to the idea of never having a diagnosis for Ryan but something keeps niggling me to keep searching.

Some pics of Ryan and Daddy enjoying Fall on the lawn mower, and the surprise i got the other day when I saw Ryan putting the key in the shape sorter box to open the door to get the shapes out. BTW if you have a child with poor dexterity in their fingers this shape sorter is wonderful as the pieces go in really easily and the child doesn't have to position them 100% correctly. Its from AMBI toys.

ABC show

2011-09-29T19:16:00.033-04:00

I design baby bedding for a pretty big company that supplies most of the major mass retailers in the US. Along with our own label we also make most of the baby blankets and bedding for Target, Walmart, Kohls, etc. Every year our annual industry trade show occurs around this time. I was excited to find out that this year we were heading to Louisville, Kentucky. Home of the Kentucky Derby.

Oilo had a large display of modern bedding

Skip Hop had a nice booth. Their Jonathan Adler diaper bags were great.

These new sheets should do well for the mom who doesn't want to use a bumper but still wants to decorate her crib.

As always Trumpette had a great booth

I loved their new line of bags ....

And this adorable hat.

There were plenty of beds and cribs to see. I like this one from Monte. Shame about the price but I'm hoping I can DIY it myself ........we'll see .....

Caden Lane always turns out a fun booth.

There were lots of pretty diaper bags on display

Dwell Studio had some nice new patterns. I love this girls color palette.

Woodland has reappeared as a strong theme.

I'm always looking for great pullover bibs, these are from Yikes Twins

I'm always on the lookout for things that can be adapted for the SN's community. I liked this little invention from TummyPod

This Niniwalker won most innovative product. Could work great for a late walker.

Cute snack bags from ItzyRitzy

Yellow and Grey is still a very dominant color palette for this year.

Oh Canada!

2011-09-29T19:16:00.007-04:00

This week has been pretty busy. We all headed up to Canada by car for the engagement party of JB's niece. Ryan had great fun playing with his cousins, although I do have to admit it stings a little to see how far along the girls are even though they are very close in age to Ryan. Its abit hard on my mummy heart. But i managed to put that aside and ultimately had a great time.

When we got home we had a bit of a crisis as our nanny had to go back to Mexico to take care of her mother who just had a car accident, so it was abit of a rush around and series of last minute interviews to find someone for Ryan. Luckily I think we have found someone that will be great. Time will tell of course. And Brenda's mom seems to be doing well.

We got the results of the sleep study. Ryan has mild sleep apnea of "central" nature. The dr didn't think he needed treated for it at the moment. Although he does snore there was no evidence of obstructive sleep apnea. He actually spends a great amount of time in dream sleep which is the most important part of the sleep cycle. He does twitch etc more than normal but nothing to worry about. His O2 levels were between 90 and 95 so once again, low, but nothing to get too crazy about. So basically, in true Ryan form, the sleep study didn't yield any answers on why hes been so sleepy during the day.

In other great news Ryan is now spooning his own food quite effectively! He can eat a whole bowl of ice cream all by himself. Its an absolute TREAT to just sit back and watch.

Mito Awareness

2011-09-24T16:13:00.002-04:00

You have heard me mention Mitochondrial Disease on this blog before. A few doctors have mentioned it for Ryan but we havent pursued any further testing for it yet. In the last 3 years though i have "met" and got to know quite a few families with little ones living with this disease. Many I met on the first Hypotonia board where they had hypotonia along wth a myriad of other symptons just like Ryan but also just like Ryan they were mostly undiagnosed. It amazes me how over time many went on to be diagnosed with Mito.

Mito can take many shapes and forms and is largly misunderstood and underdiagnosed by the medical community. This week was set aside for Mito Awareness Week.
These kids need a cure!
Thes kids need a viable treatment!
Statistics show mito is as common as all childhood cancers put together and sadly, just as deadly! That statement is a hard pill to swallow.

Please click on the below link and meet one of those families whose beautiful son Jack is living his life with mitochondrial disease.
http://jackryan4.blogspot.com/2011/09/awareness-week-surviving-life-with-mito.html

Fall

2011-09-18T22:32:00.005-04:00

Summers over!
Now its Fall,
Just the nicest time of all!

I love Fall, the multitude of color and the cooler temps are good for the soul. Ryan, JB and I celebrated the start of Fall at a Harvest Festival held by a living historical farm here in NJ. The farm is a true working farm as it would have been operated in the early 1900's. I love stuff like that ........

JB says we have a picture of Ryan hanging onto every fence in NJ and my grandfather would be laughing at me taking pictures of sheep. But who can resist......
Exhibition of horse drawn buggys. Look so similar to the one I had growing up. Yep, thats me in the weird spikey hair with my little brother, grandda and great uncle. I love how Goldie is "on the bit" If youre a horse person you will know what that means. My friends and I took this "gig" everywhere, yes we even took it to mass one Sunday and parked it right outside the chapel. The old timers got a kick out of that.

First day of school!

2011-09-07T01:12:00.000-04:00

Ryan was so excited when he saw the bus coming!

Summer report

2011-09-05T21:15:00.007-04:00

Ryan starts back to school tomorrow. No more late nights and lie ins. Its up and at 'em bright and early. "Granny Bootcamp" was really productive this summer and Ryan has learnt quite a few new skills in just this last month while being off from school. I wanted his teacher and therapists to know about all these great things emerging so they could continue to work on them in school and as I don't get the chance to talk to the teacher as often as i would like, and Ryan cant exactly tell them himself, I had him write a little note...............

Great Wolf Lodge

2011-08-21T09:13:00.006-04:00

This weekend JB, mum, Ryan and I took a trip to Great Wolf lodge for a few days. Its pretty close to home and has a great water park that Ryan absolutely loves.

"where's the pool?"

Obligatory shot

Bedtime story time

"What are we all waiting on??"

Entranced!

(Had to send JB in as reinforcements as Ryan was climbing over all the other little kids - needs new goal in school I think)

sleep study

2011-08-21T09:11:00.017-04:00

Its been a busy week. my aunt is here from Florida for a few days. My cousin from LA is starting university and my aunt and mum are meeting my other aunt in PA when she drops my cousin off at school. Hard to believe the little newborn I stayed with my first summer in NY is now going off to college, I feel so old!
While mum was away we headed to Hackensack to do Ryan's sleep study .......... 2 words ....... NEVER AGAIN. Ryan fought the whole time they were trying to put all the leads on and just as she had some on he got free and pulled them off again. If it wasn't for JB bringing out the comedy act and entertaining him for an hour we would have had to leave. JB was heartbroken and said many times "I cant believe we are putting him through this" At one point I was also ready to give up and run from the hospital. Thankfully when we got all the leads on Ryan was so worn out that he fell asleep pretty quickly, although he did wake up many times when the nurse came in to fix the leads that were falling off or being rubbed off in his sleep. The rest of the night was uneventful although its a little surreal being on camera while you are sleeping. Just praying all is normal and that's the last time we ever have to go through that test. The next morning was heartbreaking. After the leads were taken off Ryan clung to me and wouldn't let go. The really sad thing though was that I think he thought he was being tortured for something he had done wrong and was trying to say sorry. He just wanted to spend all day either hugging myself or JB. I really felt like I had let him down in some way. This journey is so hard and made so much harder when we have to put our kids through endless tests, drs appointments and procedures. Especially with a child that cant understand why hes being poked and prodded. To Ryan a completely benign and pain free test can seem like someone is sticking hot needles into him, the fear is the same.
This week we heard back from his pulmonologist that Ryan's repeat sweat test came back normal. After the ordeal of the sleep study I figured there was now no need to put him through the additional blood tests for cystic fibrosis that we hadn't got around to drawing for. Unfortunately the dr still wants to carry out the tests. I'm sure she is just crossing i's and dotting t's but it makes me a little nervous as the nurse said the Dr must have clinically had her reasons for wanting the additional tests carried out because if not she would have waited until the repeat sweat test before asking for the blood tests. Ugh.

Ryan was fitted for a new pair of afo's. These new braces will be "articulated" and will move at the heel hopefully giving Ryan an increased sense of normal walking pattern. They should be ready in 4 weeks.

The week wasn't all a wash with "doctor" stuff, we did manage to cram some fun things in. As Ryan is on vacation from school this month he spent some time at the library, unfortunately there was no one there to play with on the days he was there. Ryan didn't seem to mind as he got to play with his favorite toys without interruption. I was thrilled to have dinner with a wonderful woman and her little boy who were in NJ for the week doing some intensive therapy. We had only met previously on the internet but it was really nice to sit and talk with someone who just automatically "gets it". The other exciting thing was that she comes all the way from Alabama to do therapy with the same PT Ryan's physiatrist had recommended so we will definitely be trying that out in the future.

Ryan has made some really great strides with his fine motor. Hes now able to place the pieces in Mr Potato Head by himself. You can see him really looking for the small hole and trying his hardest to get the pieces in. Makes me wonder if the eye patching is helping his eyesight. He has also had a few sessions with his EI ST during his vacation from school. Hes enjoying working with Suzanne again and she is always great for new ideas on how to help his communication.

Wordless Wednesday

2011-08-10T21:38:00.002-04:00

Things Ryan is Loving

2011-07-25T17:00:00.006-04:00

Haven't done one of these posts in a long time, so here are some things that Ryan is enjoying this summer.

Hes loving the paddling pool Still mastering the shape sorter, this one is a little tougher.

They are learning colors in school so hes practicing matching the colors with this puzzle

Also working on numbers in school. Its been reported by grandda that he can press the correct button on all the numbers on this book

More colors and numbers

Practicing matching picture to picture animals

Working on identifying shapes

Hes enjoying this sand pit.

And loving this water play table

This float is great to lie on in the pool

Take your Grandmother to the Museum

2011-07-23T18:23:00.000-04:00

We must have been very brave to attempt a visit to the Museum of Natural History on a Saurday in August.
Waiting on the elevator with the 15 million other people.

Telling Daddy a secret.

"Not sure I like those guys!"

Found the perfect book in the Museum book store.

Week in Review

2011-07-23T01:04:00.010-04:00

The week started of pretty nasty as our whole house was sick with the flu. We were scheduled to do Ryan's sleep study but it was canceled due to him being so sick and congested which would have skewed the results somewhat. By the weekend everyone was back on track and we took a trip to the NJ Botanical Gardens. Now with NJ being the Garden State you would think that their botanical gardens would be breath taking but unfortunately that's not the case. They are nice but certainly nothing to write home about. The day was beautiful though although Ryan had some problems with the heat.

We have been working with Ryan on washing his face and brushing his own hair etc and my mum thought it was a good idea to get him a doll so he could start practicing pretend play. Hmmm, I wasn't too sure how "down" I was with this idea at the start, I guess I'm not as liberated as i thought i was but I came around as long as we could get him Soccer Dora. He does watch videos of Dora and loves them so Ryan was really excited to get his "doll" and has been carrying her around everywhere. I'm sure this will wear off in a few days though and he will go back to Buzz ;)

Hes also been doing really well with scribbling and is now really interested in doing little art projects and coloring.

(Guess Ryan is a popular name in our neck of the woods)

Week in Review

2011-07-22T18:19:00.001-04:00

Summer is in full swing and our house is full. My mum and dad are here from Ireland and Ryan is definitely enjoying all the attention. He doesn’t get to see his grandparents as often as he would like and its nice to hear how much Ryan has changed since they have seen him last. When you are with him day by day its hard to see the daily progress and how far he has come in just a few months. We are using the summer to get a lot of appointment's knocked of our ever growing list. This week mum and dad took Ryan to the hospital for his repeat sweat test and chest xray requested by the pulmonologist and the hip xray requested by the physiatrist. We got the results on the sweat test a few days later and it was totally normal this time (13) so this made me feel so much better that cystic fibrosis is very unlikely at this point, although we will wait until the blood tests are back to confirm that.

Over the last 6 weeks or so Ryan's teacher has made note of how sleepy he is in class. He doesn’t seem to be sleeping any less or doing any more activities so this is abit of a mystery. At first I blew it off as hes just a little tried today but its becoming more the norm instead of the exception and the school nurse has been calling. One day this week he fell asleep at 4.30pm and slept right through to 7am the next morning! He was also running a very low temp of 96 which was a little concerning for me. The sleepiness could be one of many things, low iron, low some other vitamin, or not getting deep enough sleep at night. Ryan does tend to have a lot of jerky movement while sleeping but it never wakes him up that I know off (but once I'm asleep an earthquake could happen and I wouldn’t realise, although I'm pretty sure JB would wake). I took Ryan in to see his pediatrician and he suggested a sleep study just to rule out anything going on that we don’t know about. http://en.wikipedia.org/wiki/Polysomnography He also tested his iron which was normal (big improvement since we started the iron supplements) and requested a few more blood tests. He checked his o2 sats which were 94 which I guess although low for a non sick, awake child not low enough to be concerned with. It will be interesting to know though how his sats are when sleeping.
This week was Ryan's last week of school before the August break. My mum took the opportunity to sit in with his class for one day. As July also marked the start of the school year Ryan's class was changed. Hes now in a class with 4 other kids that are much more mobile and vocal than the previous class. I think he should do much better in this class and we are already seeing some evidence of that as everyone has noted how much more vocal he has been recently which could be due to listening to the other kids. I also met with his new school PT to discuss the note the physiatrist made about his chair, walker etc. I was very happy to hear that the previous PT that refused to write any daily notes or even advise on his PT schedule has now left the school and his therapy will be taken over by this new lady. Our first meeting was very promising and she seems to be very clued into Ryan's strengths and weaknesses. She also thought the Benik vest would be great addition for Ryan and agreed that his current chair was too supportive. I'm much more at peace with the school situation than i was last month and I'm hoping that the changes to his class and therapy will bring about some great progress all around next year.

Swimming with Granda

2011-07-13T22:22:00.003-04:00

hippotherapy

2011-07-13T21:28:00.000-04:00

Day out with Thomas

2011-07-09T18:30:00.000-04:00

Heading down to see Thomas

Gave the conductor my ticket

Making new friends

So much fun!

Happy 4th

2011-07-04T13:40:00.001-04:00

Hope everyone had a great July 4th!

(Ryan looking a little sad as he still had to wear his patch)

BTW if anyone is patching their kids eyes, I love these patches from ORTOPAD

I don't want to stop!

2011-06-29T10:39:00.005-04:00

Standing at the standing table ............. he got up there all by himself ................... but wants to play with a toy he needs both hands for ..... so cant hold on ............... come on Ryan, lets take the toy to the carpet .............. give me you hand ............ and just like that hes walking, holding onto just one hand ............ hes doing it all himself......... just leaning on my one hand ............. across the space between his standing table and the couch ............ such a big distance for him ............ around the corner of the couch, stretching out his other little hand to steady himself ............ lets go again ...... oh no, a diet coke can is teetering on the couch armrest ........... what to do??? ........... we could stop, let Ryan sit down, move the DC and resume, but ......... I don't want to stop, I don't want to stop .......... hes walking, just holding onto one hand .......... we continue ....... to hell if the DC spills ....... my 3 year old is walking ............. we get to the carpet, and Ryan gingerly lowers himself down to the floor ........... with a sigh of exhaustion ........... and a huge smile!

Physiatrist

2011-06-27T15:13:00.003-04:00

Today was a busy day for Ryan and myself. Its the end of the school year and Ryan brought in his teachers and therapists a box of delicious cupcakes to share. He will have a weeks vacation and then will move onto a different class. Although he will be staying with the same teacher (which I'm quite happy about as she seems wonderful with the kids) I spoke with his principle and he assured me that the kids in the class will be more developmentally appropriate for Ryan.
After school we headed to our first appointment with a physiatrist (a Dr that specialises in physical medicine and rehabilitation). The kids in Ryan's school actually have consults with the partner of the Dr we saw but I decided to keep the appointment anyway. After a pretty intensive physical examination of Ryan including looking at how he moved etc we talked a little about adaptive strollers, walkers, chairs etc. He felt that the chair the school is using for Ryan is a little too supportive, and that Ryan should be using the Rifton Pacer at school and not the kidwalk. He wrote a letter to his teacher outlining these thoughts. He also suggested they use a benik vest or taping at times to help with posture. He looked at Ryan's braces and as i had thought Ryan will soon be needing a bigger size. He would like to try a hinged afo this time to facilitate a more normal gait. As Ryan doesn't "crouch" when standing he felt he could do without the support of the rigid afo's. Ryan's current orthotist doesn't really believe in hinged afos so we will have to have them made at another facility. He also wanted to get a hip xray done. Although he felt Ryan's hips were fine he wanted to get a baseline for future reference. Ryan is not standing or walking like a regular 3 year old so he wants to be aware if this starts affecting his hips in the future. He also gave me a suggestion of a great private PT near us that does Medek therapy. Ive heard of this therapy before and like any type of alternative treatment it can work well with some kids and not so well with others. But like anything its it the might help, wont hurt box so we may give it a try at some point.
All in all a really helpful appointment and I think this dr will be a great addition to Ryan's team.

Operation Easy stoller

2011-06-24T09:35:00.002-04:00

Ebay 200 pounds (sterling)

Courier from east coast of England to Belfast. N Ireland

Plane from Belfast to NJ

Best family ever! PRICELESS

Hippotherapy

2011-06-22T15:42:00.001-04:00

What is it like to mount my horse,
To touch his warm body,
To breathe in his scent ......
What is it like to move in his rhythm,
To feel every rise,
Every fall of each hoof,
What is it like when we both work together,
We move and we run and we turn and we halt.
What is it like? You might ask .........
Let me tell you .........
My mind opens up ........ My body relaxes
My heart fills with hope
I can reach for the stars!
(Robin Montegari)

Ryan started hippotherapy today with his EI therapist. The helmet took a little getting used to, he kept patting M's head to tell her to take off the hat! But he sat up straight and tall and did a really good job.
(The horse looked so like Murphy)

Straight from the horses mouth so to speak (sorry couldn't resist!) here's his PT talking about the advantages of hippotherapy.

In other PT news Ryan has started pulling up to stand in the house, all by himself, with his own motivation. This is a huge deal for him, because it lets me know he feels his balance is getting good enough now to be on his feet. Hes being cruising for a little while but I knew he wouldn't pull to stand until he felt he was ready.

A pointless appointment, and a little gold nugget at the end

2011-06-08T15:59:00.005-04:00

I know I shouldn't have bothered, Ive been thinking this all week........ Ryan's audiologist had suggested we should see a developmental pediatrician now that Ryan is at school. Made such total sense the way she put it in that it could be someone to look at him as a whole instead of his growing list a specialists all just looking at their little area of expertise. The DP she suggested has an awful reputation for being great but very very blunt, with awful people skills. I'm just not ready to be subjected to that so I garnished a few references from friends and made an appointment with someone else. Really the dr couldn't have been nicer, even when i started the appointment with "I know he is very very delayed but I don't want to hear any dire prognosis or where you think he will be in 5,10 years etc, I'm not here for that, i just want to make sure we are doing everything we should be doing, and are not missing anything medically" 2 hours later, after quite a few meltdowns from Ryan (hes just about had enough of drs poking and prodding him and checking to see if both testicles are there, even though the 10 other specialists have already checked that (when do they stop doing that!)) he agreed we were doing everything and the next logical step was a mito / metabolic expert and a repeat MRI. Ryan really didn't show off anything he could do except his ability to drool all over everyone and everything, so the dr didn't even get a good judge at where he was development wise, although he did think Ryan's school was wonderful and calmed my fears a little regarding their "total communication approach".

So I left a little deflated, really through no fault but my own's. I'm just tired, I'm tired of not knowing, I'm tired of, well, everything. Just tired............ On the way out we were standing at the elevator and there was a big number 1 on the side. I asked Ryan where the number one was, he looked around, all over, saw the 1 looked at me and smiled a huge smile and pointed (with his little thumb) right too it, and looked back at me with such a sense of "I know that mum!" His teacher had told me at the meeting last week that he was loving learning numbers. Hey, maybe shes right.

Head, More .....

2011-06-03T01:24:00.002-04:00

A video of Ryan and Suzanne taken right before he aged out of EI. She is working on sounds with him, and although hes not mimmicking the sounds exaclty (its hard for him to make his lips and tongue move in the exact manner they need to move to make the sound) its a great visual on how much he wants to talk and the focus he has.

School Review

2011-06-02T18:20:00.008-04:00

To whom it may concern ~ A Message from a Parent of a Special Needs Child (author unknown)

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is...
and not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations...
I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is and in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become...
but forgive me if from time to time I shed a tear for who he might have been.

After approximately 30 school days I met with Ryan's team at his school and our school districts service coordinator to review his goals. Present were his teacher, his PT, OT and ST, the school social worker, school nurse, me and the service coordinator from my county. It was generally informal, everyone spoke a little about what they were doing with Ryan and if they were having any problems and his revised goals. I think the major concern I had with everyone was to push him more, my little fella is quite ok with taking the easy route and he can fool you very easily into thinking he cant do something, especially when it comes to PT. I was happy though that his teacher seems to recognise that Ryan has an understanding of alot more than he is sometimes given credit for and she mentioned he loves learning numbers (wonder who he got that from? :) ) and thrives with being challenged cognitively. It was so nice to hear these words, to hear an educator recognise the ability's in Ryan that I have known for some time in my heart. Hes a smart little boy, we just have to find a way to tap into his brain in the right manner to help him learn and understand. I spent abuout 45mins in the classroom during circle time and I was very impressed with his teachers patience and genuine love for her kids.

“All that's valuable in society depends upon the opportunity for development accorded the individual.” -- Albert Einstein

Before the meeting I met with one of Ryan's speech therapists. I wanted to see what was going on in these sessions and how the "switch" and computer time was working for Ryan. I also wanted to make sure that he is being challenged to respond verbally and with the signs he knows, as well as the switch. It was definitely a worthwhile meeting as Ryan was taking advantage of her a little, sitting back letting her do alot of the work. Eg when she brought Mr potato head out she was giving Ryan the pieces and helping him put them in, I let her know that if you put the pieces on the table and ask Ryan to pick up the "eyes" he can do that with every piece. I think her eyes were opened a little as to what my boy can do. (shes seems quite young and inexperienced but hungry to learn. Luckily his other 2 ST sessions a week are with the schools head of speech department. I didn't hear alot of verbalisation's in the session and Ryan wasn't as engaged as he was with Suzanne , his EI therapist so I still have some concerns and will probably need to look into private speech therapy to supplement. Always something more to do ....... but the first time I hear him say mummy it will be all worth it.

GI Appointment

2011-05-31T23:45:00.002-04:00

Ryan and I met with a new GI doctor today. We have been seeing more and more reflux even while on the prevacid. I wasn't that happy with his original GI, well not happy enough to pay out of network costs to go back to her so I found another. Tell me why is the GI outpatient department of a major NJ hospital not take ANY insurance? That just doesn't make any sense to me. Luckily the new one is on my plan and she turned out to be so much better than the first. She is upping Ryan's prevacid to 15mg morning and night and we are to go back in 3 months to reevaluate. If the reflux is still breaking through then she will consider doing some allergy testing. Ryan has always had a sensitivity to milk that we have semi controlled by eliminating certain things etc but as the Dr put it we are kind of doing half and half as he still gets yogurt and cheese. If hes still spitting up alot after the increase in medication we might want to consider that some of what we think is still reflux might be from an allergy.

Memorial Day

2011-05-29T22:27:00.000-04:00

Memorial Day weekend we headed off to one of the old manor houses in NY for a day of "Animals and Acrobats" . A showcase of olden days entertainment.

Watching the trapeze artist.

Old Skool puppetry

Starting to really melt, must remember to buy a cooling vest for this summer. Wee man doesn't handle the heat well at all.

Hmmm, bet shes hotter than us though.

Looks like a mini version of my brother Michael here (note the shoes)

Love this guys shirt.

Touching the croc (or is it an alligator?)

School Sports Day

2011-05-26T18:00:00.000-04:00

GO TEAM BLUE!!!!
Waiting for my turn ............

What do you do with this thing?

Watch out Red team!

Need a little help from my friends.

Well done everyone! (the tall lady in the middle is my teacher)

My very first medal!

Dentist and fondu

2011-05-16T14:57:00.004-04:00

Ryan saw the dentist for the first time this week. I usually don't stress about doctors appointments but I was more than a little worried about this one. Even though I had chosen a dr that has a great reputation with sn kids I couldn't shake the feeling that Ryan, and a stranger in a white coat trying to stick things in his mouth would be a recipe for disaster. Luckily i was wrong! The dentist had a great way about him and put Ryan at ease immediately. Ryan was a superstar and recieved a glowing report. His teeth are all in excellent condition and with great spacing. It was great to get our first perfect report from a doctor. Turns out the dentists wife is ryans school nutriianist who we shall be seeing in a few weeks for a consultation. Small world!

In other news this week I had my first meeting with the CTC moms group. We met for fondu (which wouldn't have been my first choice). It was so nice to spend the evening with women that just "got" the life of having a special needs kid, no explanation.

The things we do....

2011-04-25T13:19:00.004-04:00

To get Ryan to try his glasses.
I was driving to the barn this weekend and John send me these photos of what he had to do to get Ryan to try his glasses.

Poor Brodie!Success!

School is out for spring break so Ryan spent last week getting to know his new nanny. He got to go back to the library playgroup and see all his friends.

and of course the swing is the way to a boys heart.

aquarium

2011-04-22T03:02:00.001-04:00

Good Friday we headed off to Camden NJ to the Adventure Aquarium. This is a great place to visit with kids as you can get up close with alot of the fish, and animals, even getting to touch quite a few. Ryan loved it and was really interested in all the fish, much more so than he has been in the past when we have visited these types of places. The photos are awful as i forgot to charge our camera so we had to take photos with the iPhone and the aquarium was quite dark.

first day of school

2011-04-11T13:36:00.010-04:00

(Up bright and early and happy!)

The day got off to a great start, everyone was up bright and early and waiting for the bus (which if you know me that is quite a feat as I'm late for everything but my mum is here and shes the opposite of me!) 10 mins later .... no bus ...... 20 mins later .... still no bus .....

(Playing with Daddy, waiting on the bus)

30 mins later ..... bus driver calls and they are at the wrong house! Another 10 mins later the van finally pulls into the driveway. For a few days Ryan will be on his own in a van as the driver is trying to figure out the route before adding the other kids. So big yellow bus pictures will follow in a few days. Ryan got into the car with 2 strangers with ease and was too busy making friends to realise we were not going with him and they were driving off the street. My mum and I followed in my car and after being 40 mins late the van must have put pedal to metal as they managed to arrive at the school 10 mins before us! By the time we got there Ryan was being fitted for a chair. Uh oh, this statement put the fear in me. When we got to his classroom they were having morning snack and Ryan was none to happy to be in a chair with way more supports than he needs. We adjusted the lateral supports because they are truly not needed and I'm hoping they were just erring on the side of caution and when they really get to know him they will have a much better feel of his strengths. This chair did upset me though. His school is not just a regular preschool with some special needs kids and some typical kids but its a school for the disabled and many of the kids have more extensive needs than Ryan. I'm hoping and praying that they wont try to fit him into a disabled box. I see Ryan as very typical, I'm not sure if that is a little sprinkle of denial on a whole bowl full of hope but I try to treat him in the most typical way I can. I have many typical expectations of him, eg he has to be somewhat quiet at mass, he has to help dress and feed himself, tidy up him toys, go to bed at the right time etc etc. I'm terrified they will see disabilities first and Ryan second, eg if he was slumping in a chair I would say sit up Ryan and keep reminding him until he did it, where they automatically thought "needs more support". While feeding they were using a teeny tiny little spoon you would use for a 4 month old and spooning it into his mouth when he is capable of putting the spoon in his mouth himself. They were taking the teddy grahams from his snack cup and feeding them to him when he is very capable of taking them out himself, and actually digging around in the cup until he finds his favorites and throwing the other less desirables away! I'm trying to put faith in the fact that this school comes highly recommended and I'm sure there is a learning curve with every new child, but I have a fear that Ryan is so go with the flow that without my input they wont give him a chance to show his skills. There is also the added worry that there isn't a space in the classroom that is actually more suitable for him development wise until July so there is only 1 other mobile child in his temporary class. The homily in mass on Sunday was quite apt.The priest spoke about a guy that fell out of a boat and was drowning. A ship came by and offered help but the man sent them on with the words "the Lord will take care of me" A helicopter arrived, and the man told the pilot, "it will be ok the Lord will take care of me" The man drowned and at the gates of heaven asked our Lord "why didn't you take care of me?" The Lord replied "But i sent you a ship and a helicopter!" So while having faith that everything will turn out fine, I will also have to reevaluate the school in a few weeks and if need be put on the advocacy hat and do what needs to be done with the school for Ryan.

The great thing is that Ryan came home all smiles and seemed to have a wonderful day. I know his teachers will love him!

(Wow mum, its Buzz!! Thanks Stacey)

(still patiently waiting)

(hanging out with granny)

(finally in the van, still all smiles)

3rd birthday

2011-04-08T18:38:00.005-04:00

This week we celebrated Ryan's 3rd birthday. This is a huge milestone for Ryan and a big change in our life. This date marks the day when we will be leaving behind early intervention and joining the school system. After the big party last year (which reminds me I never wrote a post on that so if you see it popping up in the next few days don't think Ive lost my mind completely) we decided to do something small and with immediate family. Its been a busy and rough few weeks with ageing out of EI, finding a new nanny, and saying goodbye to our old friends that to add a big shindig to the list would have been a mountain I didn't want to climb. Ryan didn't mind though as he had his 3 favorite people there, daddy, mummy and his granny who flew in from Ireland to see him (really me!) through the first week of school. We opened presents at home and then had a quiet dinner at a restaurant close to home. Its hard to believe Ryan is 3! In some ways he seems so like a baby still but in more ways hes very much like a wee man, just one that doesn't walk or talk yet.

This week his pictures from Venture photography finally came. I think they turned out really well.

We ended the week with picking up his glasses which he was none to thrilled about. He now has 2 pairs, one plastic pair to wear until he gets used to them and one pair of metal frames. We will see how it goes but its not going to be easy to keep them on.

It takes a village

2011-04-07T12:31:00.004-04:00

The African proverb ""It takes a village to raise a child" was made famous by former first lady Hillary Clinton. This has never been more true than in the case of a special needs child. No one can get through this journey without the ongoing support of family, great friends, and professionals of all shapes and specialities. Therapists, doctors, care givers, social workers, medical personnel become a daily part of all our lives. Today Ryan said goodbye to the wonderful ladies who have laid a great foundation for his next "village" to build upon. These ladies have all shared in my moments of utter happiness and sometimes despair, have been there when I needed advice on new treatments, or diagnosis' that were on the table. Have talked me back from the edge when i would get down about Ryan's lack of progress. And most importantly have been there for Ryan to encourage, and help every step of the way. They were able to see promise in the early days when my judgement was severely clouded by the circumstances we found ourselves in. I opened up my home to them and in turn I made some wonderful friends who I hope will be around in the years to come.

Good Bye Diana.

Ryan is going to miss you more than we all know. You went above and beyond the job of nanny every day, making sure Ryan was able to practice all his therapy, but also taking him to the park, the library class, and swimming so he could just be a normal little boy at times. Although I'm sure carrying a half naked 33 lb low tone toddler into the pool was no easy feat for your little frame. I'm going to miss having someone around to remind me when I forget appointments are coming up, and someone to keep Ryan's stuff incredibly organised, clean and tidy!

Good Bye Susan. (OT)

You have been with us since Ryan was 5 months old. You have seen him grow from the little baby who couldn't even hold his head up on the ball, to the walking, crawling wonder he is now. I truly believe it was your determination that made this little guy crawl. You were the one that worked on it the most and you weren't giving up.

Good bye Stacey (DI)
You had a bit of a rough run of it with Ryan at the start. For some reason he hated play therapy and cried through most of the early sessions. But he came to love you like I did, and now he lights up when we mention your name. Thank you for always treating me as a fellow mother, and friend first, and not as a client. Your insight was always appreciated, even when it was something you technically weren't supposed to say ;) You always put our family and Ryan first and the job second
Good Bye Suzanne (ST)
Ryan has enjoyed every session with you. He has watched and waited to see what comes out of your bag of tools next. You were able to get him to respond in ways no one else could. Thank you for always believing in him and for seeing so much potential. Good Bye Marilyn (PT)
Dear friend, thank you, thank you, thank you! When you joined our team a door was opened and hope stepped in. Words are not enough. See ya at Hippotherapy :)

week in review

2011-04-01T14:32:00.005-04:00

Its been a busy week. Ryan starts school in a little over a week so I have been frantically looking for a new nanny. Unfortunately Diana needs to work full time and with Ryan being at school all day I just don't have the hours for her. I have been busy looking for someone else but its hard when you are only offering 3hrs a day of work. Not alot of people want to give up every day for only 3 hrs. Today I finally offered someone the job and she accepted, so I'm very glad to tick that chore of my to do list. Not having someone lined up was stressing me no end so now I can relax a little and enjoy his last week or so in EI.
I received a phone call from Ryan's pulmonologist and the results of his sweat test were in. His result was "borderline" (45 to be exact) so she wants us to repeat the test and do some additional blood tests that will look at genes normally associated with cystic fibrosis. She doesn't believe he has CF and if he does its very mild, it is just common practice they repeat the test with a borderline result. She also wants to repeat his chest xray as it still had concerning "scars" on his lungs when checked last.

We also visited Dr B for Ryan's 3 year old well check. We had some paperwork to fill out for school and also had to bring his vaccinations up to date. The "selective and delayed" vaccination schedule worked out really well for us and it meant he was only missing his MMR and polio and HebB. We did the Polio and HebB last week and MMR today. I felt so much more at ease doing the MMR at 3 rather than at 1. Hes still 85 - 90% for height, and his weight jumped to 33lbs which is 60%, which is a great increase from 25% last check.
We had his Formal Intake Meeting with his new school. Basically just a meet and greet between the school staff, therapists, Ryan and myself. Each therapist asked questions about his skills, day to day activities, feeding etc and the school nurse took the details on all his current drs and medication. We will all meet again in 30 school days to review his IEP goals and discuss how Ryan is settling in. I'm still having a hard time accepting that Ryan will be going to a disabled preschool but if this is where he needs to be to have the best chance at progressing then I'm learning to accept it. The school comes highly recommended by everyone I have spoken to in our area so I'm praying this is the right placement for Ryan. We have had such luck with his EI therapists that its hard to let go a group that has so much love and hope for your son and hand him off to a group of strangers but change is not always a bad thing in the end...... I hope ......

We are waiting anxiously for my mum to arrive from Ireland and preparing to celebrate Ryan's 3rd birthday. Hard to believe its nearly 3 years since I first laid eyes on this beautiful little face.

Opthamologist

2011-03-29T09:09:00.001-04:00

Back on March 15th we had an appointment with a new opthamologist. While i liked the previous dr I felt he wasn't taking my concerns about the turn in Ryans eyes seriously enough. In the past few months all Ryan's therapists have mentioned his eyes turning more, and concerns about his vision. I have also noticed that in later photos what used to be a rare turn is now becoming more of the norm to see. This was something the opthamologist Ryan has been seeing since he was 5 months old told us would get better with age, not worse! One of Ryan's therapists has a child with vision issues so we went for an appointment with her doctor. Turns out Ryan does have a true turn in both his eyes at separate times and needs to be patched. He is also near sighted so he also needs glasses. Not a huge prescription at the moment, and we could probably get away with waiting on the glasses until he is about 6 but the doctor felt if he will keep the glasses on it will be easier to patch his eye. We headed to check out kids glasses today and i think we're in for a battle. Ryan wouldn't have them anywhere near his eyes! Lets hope this gets better with effort. He did look kind of cute in them though.

cruising

2011-03-27T09:57:00.000-04:00

Our Gift of Love

2011-03-22T08:55:00.005-04:00

Our Gift of Love

by Herman Ross Fillingane

We first look for reasons

On where to place the blame

Though their health may be different

Their heart is still the same

We're sent a child

with so much love to give

With a fight inside

And a reason to live

To be touched by a love

That few will ever see

Our child can show the world

The way love should be.

Spring has sprung!

2011-03-12T12:40:00.000-05:00

Finally the weather has changed and we are able to get outside with the walker. He is going up a hill so the PT needs to give him a little hand.
(sorry, dont know how to turn the video around)

Im needing some inspiration today...........

2011-03-11T14:27:00.003-05:00

(Giants Causeway, Antrim, Northern Ireland)

Just a little down about the type of schools they are suggesting for Ryan today :(

Huggle Buggle Bear

2011-03-10T18:23:00.000-05:00

Ryan enjoying his new book.

Oh no!

2011-03-10T14:05:00.006-05:00

Wee man has decided that he doesn't like macaroni and cheese!! Hes turning his nose, pushing it away and covering his mouth, I think that's loud and clear that he doesn't want it. Now to be honest I don't know how any kid likes macaroni and cheese, i hate it, cant stand the stuff, would never eat it if my life depended on it, ok maybe that's a little exaggeration, but i think you get the point. Awful stuff, but seemingly kids seem to like it, and Ryan loved it ..... until now. It was always that easy thing to feed when we were in a rush and JB wasn't cooking. Ryan is a "great feeder" as we would say in Ireland as long as the texture and lumpiness is just right. Hes still on alot of mashed foods as his chewing is a work in progress. Vegetables are too hard, will only eat the mashed up kind, he wont touch fruit if he has to eat it himself, the squishiness makes him gag, it seems that everything that hes able to chew at this point and can lift himself is not healthy, eg fish sticks, chicken nuggets, although its still a battle to get him to eat them himself until he finds out ..... once again ...... that they taste good. Hey, if I had servants feeding me for 3 years I would probably fight the whole self feeding thing too, funny how he can put away teddy grahams like they are going out of fashion all by himself. So I find I'm constantly battling on what to give him. Add in the fact that i don't cook and our options are definitely not wide ranging. Its quite hard keeping him on a somewhat healthy diet with all these factors.

Found a really cute book at Borders that I think will become one of our bedtime favorites, Huggle Buggle Bear. I love the illustrations, and its just a really adorable story about a boy looking for his bear before going to bed. Ryan loves to point out each of the individual animals when asked. Hes still using his thumb to point but we are working on Peter Pointer. Seems we were a little too successful at getting those thumbs out and usable when he wanted to be fisted, not he wants to use them for everything.

Busy Week

2011-03-04T14:29:00.007-05:00

Its been a busy week here.

On Tuesday Ryan and I visited a DME in Manhattan to check out adaptive strollers (that's just another way of saying wheelchairs that try to look like strollers but really don't). I was worried that i was getting a little ahead of myself with looking into adaptive strollers but the therapist at the Rusk institute didn't think I was jumping the gun seeing Ryan is not walking at all yet and probably wont for a while. The stroller we have at the moment is not great for support and the therapist brought up a great point that why do all the work in PT and then run the risk of undoing it by bad posture in seating. Made sense to me. The therapist brought out a chair that he thought would work and it was one i had been looking at online. Ryan loved sitting in it. He was upright and further off the ground which I think he really liked. It has a great tilt in space feature with 180 degree recline which might come in handy for diaper changing and has bus tie downs if ever needed. Alls left now is to place the order ....

On Wednesday we went to take care of a few tests I had been putting of for while purely due to lack of time. We had a sweat test for cystic fibrosis. I didn't realise how torturous this test would be! Ryan was MAD MAD MAD at the world when it was all over. Then to add insult to injury we also took care of some plasma amino acid blood tests that Labcorp in our area couldn't perform.

We finished off the week with a great trip to the barn. The snow had finally cleared and it was so nice to see the horses munching on grass and "naked". Murph was his usual good boy and Ryan got to have a ride on the little appaloosa pony Splash. This time he was in an english saddle with no pommel and was still able to sit up like a pro! I think hes a natural. He also loved all the attention from his many "barn aunties" and it was so great to be able to show them his new skills of crawling and pulling up he has developed over the winter. It was a fun way to end a stressful week with peaceful surroundings and great friends.

Choosing Joy

2011-02-25T16:05:00.005-05:00

Writing that last post about the IEP evaluations really made me reflect on how far we have all come in these last few years. Of course Ryan has come so far, from having a 10% chance of surviving the pregnancy to walking in his walker and doing transitions I never thought he would do. There were days when I didn't think I would ever see him sit, or even bear weight on his feet. I cant talk about how sad I was during the pregnancy, birth and the months to follow, how I uttered some words i cant repeat and can never take back. Some things are better left off this forum and I'm basically a very private person who doesn't share feelings very easily, must be the Irish thing. My mum didn't even know there was a problem when I was pregnant until Ryan was about 26 weeks (I had found out at 11 weeks) and it wasn't until she got to the US just before I gave birth did she know the extent of the issues or how serious they were. Only one person at work knew there was anything wrong at all, although I don't know how they could miss the ultrasounds i was having sometimes weekly. I was grieving, and couldn't see my way out except to just kept putting one foot in front of the other, and although on the outside all seemed to be ok on the inside I was dying. When I hear about another mum just finding out that their child is delayed or something is wrong my heart goes out to them, because i know how hard that first year or so is and how it can completely consume and envelop you if allowed. Every tiny little thing could push me over the edge at that time, and just when I thought things were getting better something quite insignificant would happen and the floodgates would open.

Having your child evaluated by a group of strangers who don't know anything about him and who's primary purpose is to find out what he cant do is incredibly stressful, and a few years ago would have sent me into a tailspin. When the school team descended on the house last week, yes I was nervous but then i realised that Ryan is not going to show anything I don't know already about him. And as a bonus he showed them some things I didn't know he could do. I was really quite surprised that I was ok with how he preformed. (Although I'm not exactly happy that he has to perform, I would much rather just allow him to just be)

Today i try to choose Joy. I try to look at the positives, wow he was able to pick up the ravioli on a fork tonight, what a great sleeper he is, and the fact that this winter hasn't been so bad in the sickness department. The little things that I'm so thankful for. We can get bedded down in the cants and wont's, but I refuse to live my life in pity. The reality is that my son is 34 months and doesn't walk yet, has never said one word, not even mama, and that is SO hard to accept but I choose to not believe that the world is not his oyster. Hes happy and full of joy, hes making little discoveries each and every day that he can build on. Just yesterday he was sitting with a bucket and rocking it back and forth with a little ball inside, then he would add another little ball, and the laughing would start, adding another little ball, and the laughing got greater. I was so entranced in the joy he was having with his little game and his happiness is infectious, and I guess laughter really is the best medicine.

Wordless Wednesday

2011-02-23T14:00:00.006-05:00

OK, maybe not so wordless but its my blog so I make the rules :)

Ryan has a new friend. Hes never really taken to cuddly toys before, well except Tolo but Tolo the big green dragon was more of a toy as he had crinkly stuff and mirrors etc on him to play with. But Ryan has fallen in love with a little lion who JB named Ryan the Lion! Talk about trying to confuse the child! Naming his toy the same name as him, but somehow it stuck. Ryan wont sleep with out Ryan the Lion and carries him everywhere. Santa brought the lion for Ryan at Christmas, and I didnt realise until we opened the box that he has a little peace sign on his foot. Funny, as that was my wish for 2011, that even if we did not get all the answers we wanted this year that we would find some sort of peace.

IEP evals and other stuff

2011-02-20T11:31:00.001-05:00

Its been a looooong week, filled with quite a few highs and lows.

We are moving along with the preschool process, last week the school social worker came to the house to take an in depth social and medical history on Ryan, covering everything from sensory issues (luckily few except for the singer in chapel that sends him into fits of crying whenever she opens her mouth, and the whole clapping issue) and pregnancy, birth and subsequent medical issues (unfortunately long, she wasn't letting me away with my 3 line synopsis about the pregnancy and birth that i normally tell to new people, she wanted to hear all the gory details, ugh.)

This past Tuesday the school psychologist and social worker came over to carry out the cognitive, social and adaptive portion of the testing. Ryan responded really well to the psychologist, after we laid the ground rules, no clapping please. I was really nervous as they use their own toys which tend to be very very plain but he showed off most his skills, especially in shape matching, and puzzles. The psychologist mentioned that his skills are very scattered (they use the Battelle reports which are notoriously language based and as Ryan really doesn't have an expressive language yet it tends to bring down his skill level quite abit) but she was happy to see his display of cognitive abilities with the matching games she was playing. They asked really weird questions like does he play with his fingers (hes a little old to still be interested in hands) and then they jump to identifying a bird from a really complicated and busy picture. Seemed to bounce all over the place to me but I think they were just trying to get a high and low baseline, Ryan's not exactly on the borderline for qualifying for services so I guess they don't need to see exactly where he is at with every little skill. I was proud that Ryan was happy and did all their tests without complaint, he was very very interested to see what was coming out of the bag next. He really does love one on one interaction with learning stuff, even with the hardships he has when his fingers don't work the way he wants them too.

On Thursday the school PT, OT and ST came along with the SW and as I had to wake Ryan up from his nap as they gave me really short notice on when they were coming this appointment didn't go so well. Ryan was a little crankier and tired than normal and not so welcoming about having 4 strange faces firing questions at him all at once.
Schools off next week for February break and then the week after I should have the results. Oh what joy! Cant wait! If Ryan is able to show off his skills to the best of his ability in evaluations then I'm happy. Now reading the scores on paper in black and white is a whole other story. Its hard to stay in the bubble of our "normal" when the comparisons are staring you in the face. But that worry is for another day .........

PT wise he is continuing to do well in his walker and is cruising in the walker at the standing table (you can see in some of the pics below all the wheels are turned sideways from moving sideways along the table). Hes also cruising really well on his knees and even transferring from one object to another without crawling in between but he still doesn't have the balance to do this on his own in standing. All things in Ryan time.

I think we need to get some more calories into the wee man, those pants are 24months and hes having trouble keeping them up when upright.

Playing with JB's iPhone.

Ryan's PT "M" lives on a lake which freezes over each winter. Every year they have their annual White Trash Weekend where all the neighbors get together on the snowy beach and barbecue and take the quads and snow mobiles onto the lake. JB, Ryan Brodie and I went along this weekend and had a great time! I also got the opportunity to meet a family that M worked with a few years ago. Its actually the same family that owns all the therapy equipment Ryan is borrowing. The little boy is now coming 6 and just started walking and talking in the last 18 months - AMAZING. It was so nice to meet someone in real life that just gets it. Someone who has been through all the NICU stuff, and EI and school stuff and lack of a diagnosis etc etc. The great thing is that this little boy went to the same school as they are thinking of for Ryan and the mum LOVED it. This made me feel so much more comfortable after the week of evaluations we had. Now we pray they have a place for the wee man.

And who can resist a picture of Brodie :)

Valentines Day

2011-02-14T10:27:00.001-05:00

Holland?

2011-02-02T17:33:00.007-05:00

If you hang around the special needs community long enough you will inevitably come across the essay titled 'Welcome to Holland"

WELCOME TO HOLLAND
by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

If you look alllll the way over on the right sidebar, that's right, keep looking, under the description of our family and above the little colorful boxes indicating the wonderful people who follow Ryan's journey (Thank you ALL) you will see I have added a new "button". Give it a click to be taken to an equally wonderful piece of writing about how it TRULY feels to be dropped from your regular life into a place that's so foreign, so alone and so strange, the place you have to walk through to get to the beauty of the "tulips".

Thanks Dana for sharing your thoughts and for being honest enough to say that yes, this does sometime suck .....

BTW, did you know tulips are HOT in baby bedding right now. Just thought i would share :)

Look what i can do!

2011-01-24T13:27:00.003-05:00

First Preschool Meeting

2011-01-20T23:00:00.003-05:00

Today was Ryan's first official meeting with our school district on his transition from Early Intervention to school. We met the Child Study Team at the towns elementary school, present were Ryan's new caseworker, psychologist, speech therapist and occupational therapist. We talked a little bit about Ryan's history and his strengths and weaknesses in all areas. We discussed in district and out of district placement options. It seems highly unlikely that Ryan will be placed in district as they would like him to be in an all day programme to enable him to have as much therapy as possible but the case worker hasn't stopped looking for all day preschools a little closer to home. I'm still very concerned with the out of district school and Ryan not being exposed to walking / talking peers enough. Although I understand the need for concentrated therapy as early as possible as the school systems main goal is the mainstream Ryan at some point I still think he needs to be around regular peers in order to motivate him to move and talk more. I'm also struggling with the school being 5 days a week as this also takes away his ability to continue his playgroups and swimming lessons. And then on the other hand I feel very ungrateful as i know there are some parents in other states that would "kill" for 5 days a week / all day preschool. But I still feel its too much too soon. I'm trying to not put the cart before the horse and wait until after the evaluations until we know more about which placements they are considering before I start freaking out. We discussed Ryan riding the bus and how he could be dropped off in another town as long as it was the same location every day. I was worried about this one because if he had to have been dropped off in our small town it would have made it next to impossible for me to have found a babysitter for the afternoon hours while I'm still at work.

So basically over the next month or so we will have more meetings and conduct evaluations so we can write Ryan's IEP (Individualised Education Plan) Its all very scary to think that in less than 3 months we will be moving on from Early Intervention, looking back the past 3 years have flown by! Ryan is really growing up way too fast.

Murphy and Champ enjoying the snow, while the barn pet deer Pebbles watches. (Yep, random i know)

(art by Holli Conger)

Snow Day

2011-01-18T14:09:00.003-05:00

Ever seen the Rocket Dog " logo?

What is your Dream?

2011-01-17T15:16:00.000-05:00

"It really boils down to this: that all life is interrelated. We are all caught in an inescapable network of mutuality, tied together into a single garment of destiny. Whatever effects one directly, effects all indirectly. We are made to live together because of the interrelated structure of reality ... "

Dr. Martin Luther King Jr
1967 Christmas Sermon

Welcome to the club

2011-01-10T14:36:00.002-05:00

I just wanted to share a piece of writing that I came across a while back. I think out of anything Ive read about this special needs journey this particular piece illustrates so perfectly what we mums feel and NEED to hear when the realisation hits us that our kids are "different". Forget windmills and tulips and the country Holland in some abstract sense, we just need to know that its going to be tough, yes, but it will all be ok. The amazing thing is that this letter is written by a mother who has a daughter with autism who is writing to her friend whose child is suspected of being on the spectrum, but it truly is relative to all mums no matter what the special need your child has. Funny how that is ......

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

Snapshots of 2010

2011-01-01T02:55:00.008-05:00

Happy New Year everyone!!! My hope for 2011 is for our family to stay happy and healthy and for many more smile-stones to come Ryans way. May 2011 be a wonderful, amazing year for you too!

Peace.

2010-12-30T20:09:00.006-05:00

I'm sitting here listening to Ryan sleep, or try to sleep in between coughs. Hes been asleep since 4.45pm, its 8.10pm. Its very rare for him to be asleep at this time, usually it means hes pretty sick. JB's been really sick for these past few days, hes been in bed with a fever, aches and pains, and a barking cough. Ryan seemed to be doing ok, although hes had the off and on runny nose since getting back from Ireland hes been holding his own. All that changed today, hes got a fever of 102 and quite a substantial cough. Ugh. This is when I really hate the fact hes undiagnosed for some reason. After his hospital stays this year I cant just let myself sit back and think, "Agh, its just the flu, 2 more days and he will be right as rain" If 2010 taught me anything it was that it can all go downhill very quickly. If he had a diagnosis we would have some sort of baseline of what to look out for when he gets sick, but we don't, and not to be overly dramatic or anything but I feel I'm always waiting for the other shoe to drop! We don't know whats up with that little brain / body of his. I see weird things going on all the time that don't make any sense. Sometimes his right eye turns in, or wanders around. Sometimes he just doesn't seem as with it as normal. I have no clue whats going on inside him that's contributing to this stuff. What makes him really crash when he gets sick. My hope and prayer for 2011 is that something or someone will point us in the right direction. I need some PEACE with this diagnosis stuff. I'm tired of the not knowing, of wondering, of waiting, tired of the big white elephant in the room. Would a diagnosis change anything about Ryan, probably not. He will still be that very sweet, happy go lucky, easy going, huggable little boy hes growing up to be. But I want to know whats wrong with my child! If all his little idiosyncrasies and mysteries are part of a much bigger diagnosis. I want to know if something more worrisome is lurking round the corner. Ugh, i just want to know. Is it really too much to ask?

Wordless Wednesday

2010-12-29T14:49:00.000-05:00

Barn in Blizzard

Christmas day

2010-12-25T14:04:00.010-05:00

Fr Lope, Christmas Morning 2010

"Remember that when the angel Gabriel came to Mary and asked her to be to be the mother of God, having a son that would belong to the whole world was probably not her idea of motherhood, but sometimes your vocation is something you can't fight and we have to trust in Him, that He knows the ways and the reasons ....."

Another Buzz to add to the collection.

He spots Mr Potato Head ...

And JB and my present, a new camera. Now I have to figure out how to use it. Wheres the button for blurred backgrounds? ;)

Santa!

2010-12-20T14:27:00.003-05:00

Lucky little fella saw Santa on both sides of the Atlantic. That man in the red suit sure does get around.

Heres Ryan with Santa in Ireland - (Ryan looks so big here!)

And in New Jersey........

Theres an elmo in my bedding!

2010-12-19T23:14:00.002-05:00

I found this hilarious. I was reading Ryan his bedtime story last night and came across this pic of Elmo in the book. The crib bumper and sheet in Elmo's crib were one of the first bedding designs I did after starting my current job many moons ago. Ryan was a little perplexed when I jumped up yelling "John, look whats on Elmo's bed!" in the middle of his story. So nice to see my work has a far reaching audience :)

The boy can hear!

2010-12-19T15:18:00.001-05:00

Today we had our long awaited audiology appointment. Long awaited only in the fact that it took me so long to schedule the appointment. I have a TO DO list the length of my arm and I'm trying to make my way down it. This appointment wasn't super urgent as it was just basically to satisfy my curiosity so kept being pushed to the bottom of the list. At 9 months Ryan tested as having moderate hearing loss, probably due to fluid. AT 11 months we had the ear tubes put in. Now I know he can hear, maybe selectively like every other 2 year old, but I just wanted to make sure there wasn't an underlying hearing problem contributing to his lack of speech. Even with the tubes in we have had pretty regular ear infections and repeated infections can do some damage over time.

I must say the audiologist we saw really knew her stuff. I loved the way she spoke to Ryan and explained to him everything she was doing and didn't rush him. He was a little inconsistent in the booth where she says things in varying degrees of loudness. He was looking for the location of sound at the normal speaking level but when she was whispering he was ignoring her. That might have had something to do with the fact he was playing with Buzz, and we all know Buzz comes first! She then proceeded to do an OAE test, the below link gives a pretty good description of what that is.

http://www.medterms.com/script/main/art.asp?articlekey=21150

I was amazed she was able to put the probes in his ears without any fussing or crying. I tell you this woman was a miracle worker. Thankfully he passed that test, so basically she can say he has good enough hearing to speak (they cant rule out slight hearing loss with this test, and to do so we would need to do an ABR test under anaesthesia which would be overkill at this stage)

She then did a test to make sure his tubes were clear. His right tube was fine but his left tube has fallen out of the ear drum but the drum is vibrating fine.

We also spoke at length about Ryan's development. She mentioned they had a great developmental pediatrician at the center who is actually on the board of the preschool that Ryan will probably be attending come April. Ive been wary of seeing a DP as do I really need another professional telling me that "guess what, your son is delayed!" but she thought it might be a good idea seeing Ryan is undiagnosed and with the school system you really want someone in Ryan's corner looking over his issues globally and making sure everything is being taken care off. Made sense! Its one of the fears i have of leaving EI in that I wont have as much access to his therapists and his day to day activities as the therapy will no longer take place at home. She also suggested seeing a physiatrist. Whats that I hear you say? That's a medical doctor who focuses on the body's musculoskeletal system with a comprehensive approach which means treating the whole patient, not just the individual symptoms. Someone that could help Ryan with walkers, adaptive strollers etc. Ahhhh, 2011 is going to be a busy year.

Going Back Home

2010-12-15T11:44:00.005-05:00

"Look out to the left,
the captain said,
the lights down there,
that's where we land"
- Joni Mitchell

(Ryan taking a snooze on the plane)
This week we all travelled back to Ireland. Its been 3 years since Ive been home, 2 for JB and it was Ryan's first time. The trip got off to a shaky start when numerous delays due to weather and mechanical problems turned a 6 hr flight into 18 hours. We were allowed to leave the plane once in that time for 30 mins when we made an unscheduled stop in Shannon airport due to severe weather in Belfast. Ryan was such a trooper the whole flight, he laughed and giggled, slept, ate, drank, and watched ALOT of TV during the whole ordeal. We couldn't have asked for a better traveling companion! Ireland was uncharacteristically covered in a blanket of snow when we arrived. I could never remember snow like this growing up! it was truly great for Ryan to get to meet all his aunties and uncles and cousins, he felt VERY loved. I headed back to the US after 1 week and John and Ryan stayed on for another week. NJ is going to be very lonely without them.
A few pics of Ireland in the snow, Dec 2010. Truly beautiful countryside
(Sorry I don't have the names of the photographers to give them credit)

Congratulations John and Rebecca!

2010-12-06T18:12:00.001-05:00

My youngest brother got married this weekend. Welcome to the family Rebecca.

Blessings

2010-11-26T12:22:00.009-05:00

Its that time of year again, the wonderful American holiday of Thanksgiving. Time to give thanks for all the blessings we have in our lives. I know people see Ryan and his challenges and see how difficult it all must be but honestly we have so much to be thankful for. Ryan's delays have really opened my eyes up to how much we all take for granted. We have kids and just expect then to crawl, walk, talk, go to school, grow up, get married, have their own children, but sometimes that's not whats in store for them, or if it is it will take alot more work than the average child. I have faith that Ryan will do all those things, that his future is wide open and full of promise but that its going to take alot of effort on his part. I know he is up for the task, he shows us this everyday. I also know that it could be a whole lot worse! That the challenges we have as a family pale in comparison to the challenges others have. The rosie red spectacles have been removed. So yes, we are truly blessed for everything we have as a family.

- I am thankful to have some family near by to spend thanksgiving with, being so far away from home on holidays really makes you realise how family is so important.

- Thankful for puzzles that keep a wee boy entertained on a cold and rainy November day in NJ.

- Thankful for holiday cupcakes - just because!

- Thankful to have so many wonderful therapists in our lives that work harder that I can imagine even after taking a pay cut because of the NJ budget. It will be so hard to let them go in April although I have a feeling we will be keeping in touch.

- Thankful for true 4 pt crawling! We are seeing all the hard work paying off. slowly but surely

- Thankful for friends near and far who walk with me on this journey.

- Thankful for facebook for enabling me to keep in contact with far way friends much easier, I'm not so good with making the phone calls!

- Thankful for the on line mums I have met and now call friends who inspire me everyday, and make us feel so not alone.

- Thankful for work at home Wednesdays!!!

- Thankful for therapists who make all this hard work fun for Ryan.

- And last but not least we are especially thankful that Ryan's health is stable at the moment, and he continues to progress and do well.

Hey people!

2010-11-21T10:08:00.002-05:00

Need some help here!!

My favorite picture!

2010-11-18T01:28:00.000-05:00

Ellen over at http://www.lovethatmax.blogspot.com/ is hosting a picture carnival where shes asking us to show our favorite pic our kiddos. Here's mine of Ryan;

I love this picture because it is so peaceful at a time that was so tumultuous. Ryan is 2 days old here, and I hadn't got the chance to hold him yet, he was in the NICU and I was in recovery trying to get my blood pressure down from the pre-eclampsia. I couldn't leave the bed and he couldn't leave the NICU so JB brought me this picture of our new son. I was so tired from the 28 hours of labor, so bloated from the 45 pounds of excess fluid (yes 2 weeks later I would be 45 pounds lighter), so drained from the emotional, scary pregnancy, so sore from the c section, and so so worried about my little boy who had fought the odds to be here and who I had yet to hold. This picture brought me a great sense of peace and when I look back on those days instead of remembering how everything went so wrong it helps me remember that everything is going to be alright.

Hope- Emily Dickinson

2010-11-15T14:31:00.003-05:00

"Hope" is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all,

And sweetest in the Gale is heard;
And sore must be the storm
That could abash the little Bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest Sea;
Yet, never, in Extremity,
It asked a crumb of Me.

Week in review

2010-11-12T00:01:00.006-05:00

So whats been going on in our household this week? Wednesday we went to see Ryan's ped for his flu shot. This was actually a hard decision for me to make but I feel it was the right one this year. With Ryan's "dodgy" lung function, sorry i don't have anything more official to call the fact that we end up in the hospital more often than not with a simple cold, I felt I had to put my vaccinating concerns aside and get the shot to at least give him a fighting chance of getting through this winter without hospital admission. Although believe me I was seriously considering putting off the appointment when on Saturday Ryan was running a 104 fever and was lethargic all day. Another high fever with no obvious reason. Thankfully he bounced right back on Sunday and by Wednesday all was ok for the shot.

At the appointment we also discussed the latest round of blood tests. Ryan had all his immunoglobulins tested and all were normal except IgE which interestingly enough is usually elevated in people with allergies / asthma!

As we suspected vitamin D was low so we have started him on some Vit D3 supplements.

Ryan's doing do well in all his therapies these days. Hes really getting much better at the crawling. Here he is enjoying M's tunnel which 2 weeks ago he wouldn't go near.

Ryan finally had his first real hair cut. I had been waiting until his sides came in better but as he was developing a rather unattractive mullet at the back I felt we couldn't in good faith wait any longer! He did excellent at the hair salon. Sat up in his car chair and let the lady cut his hair without any crying or moving around. Guess he also wanted rid of the mullet!

Before any cutting - looking a little glum :(

Finished result! What a handsome boy!

Reflections of Motherhood

2010-11-06T14:27:00.005-04:00

I just came across this video today, and think its just beautiful, the varied faces of motherhood and what they would tell a younger version of themselves. What would I tell myself? If I could go back to the scary time while pregnant? What would I tell others facing the same journey?

The one and only place I could find any support for a cystic hygroma pregnancy was on the website, http://www.benotafraid.net/ , now there are alot more places on the web I think due to the increase in higher nuchal fold measurements being discovered due to earlier in-utero tests but 3 years ago this was the only website I could find. It also just happens to be part of the chorus of one of my favorite hymns

"Be not afraid,

I go before you always

come follow me,

and I shall give you rest"

These words were constantly on my mind while i was pregnant and gave me great comfort. And now they ring so true, although the journey is not what i would have chosen for myself, its way less scary now, than it was way back then, and Im so very grateful for everything it has taught me.

Crawling!

2010-11-05T17:57:00.002-04:00

Hes having trouble keeping his pants up but he is actually crawling!!!

First pony ride

2010-11-02T23:55:00.002-04:00

I suspect that parents of typical kids are always on the lookout of the parts of themselves they see in their own kids, not just stuff like "hes got my nose" (Ryan definitely does have mine) or "his hair is red like his fathers" (sorry JB, blond like mine too) but also in the harder to see at first glance traits. With a delayed kid its always hard to know what is part of his personality and what is just the delays. Maybe Ryan's quiet because hes just quiet, or is the hypotonia, they say hypotonic kids are more laid back, no one has ever accused me of being laid back but JB certainly has an ample supply of that trait, so who's to know?

You also want to see your kids take an interest in the things you also like. I'm sure every father that was ever on a high school football team cant wait to see his kid run onto the pitch. Or every artist cant wait to see what talent their little one has with a paintbrush (or adobe illustrator!). I did alot of Irish dancing growing up and often thought that my kids would dance too. Or would they be musical / play an instrument like myself? Would they enjoy drama (we have that on both sides) ? Or be able to spin a good yarn (I wont say which side that comes from, but those involved know who they are) When your child is 2 1/2 and just crawling and not uttering one word you begin to wonder what activities they will enjoy? Will they get a chance to experience all the things you did as a child? Will they enjoy dancing even though they will never be Michael Flatly? Or paint even though it might not be a Monet? I worry about these things for Ryan, I want the world to be his oyster, for him to be able to go out and develop his talents without restrictions. No matter if these things are possible, the one thing I know he will be able to do, something I'm much more passionate about than dancing or singing, or playing violin, I know I can expose him to the gift of horses. This is something he can enjoy even if he doesn't walk or talk for a while. He got to experience that this weekend, and i have to admit hes a natural! I guess the apple doesn't fall too far from the tree after all!

Halloween!

2010-10-30T14:02:00.003-04:00

Brodie has had enough excitement for one day ....

And Mum headed back to Ireland. See you in December.

How do you ......

2010-10-26T16:30:00.000-04:00

punish your mother for travelling halfway across the world to see you for a week? You send her and the nanny to get a 2 year olds blood drawn! Ryan has had multiple blood draws and finally we found a lab with a person that could do them quickly and with the least amount of fuss. She truly was a godsend. So as work is crazy at the moment and I can never get 5 mins (of 120 mins in reality) to take Ryan for yet another blood draw I figured this was something that my mum could knock out while she was here visiting. Turns out the lady we loved has left the lab so my mum was confronted with 2 people that had no intention of giving anything over 25% effort to get blood from Ryan. Ugh, I'm not sure why these labs say they have pediatric specialist on staff, and even assure you of this when you call to make sure, when they actually have no intention of even remotely trying when you get there. Good for my mum though, she insisted they tried again after letting Ryan relax for 30 mins and the second time was a success. So peds requested tests have been sent, and we just have the pulmonologists additional blood tests and sweat test to do. Luckily they want these done at the hospital so hopefully that will be less painful for all involved. Now I just have to find the time .....

Pumpkin Picking!

2010-10-23T22:34:00.002-04:00

Orthotics

2010-10-19T14:33:00.004-04:00

Ryan saw Dr J in Long Island today for a check on his orthotics. Hes been refusing to walk in the walker for a few weeks now, and keeps pulling at his braces and shoes, giving me the sad face look. His AFO's are 9 months old so it makes sense they may need to be adjusted for size. I love this guy as hes very thorough and really knows his stuff but how did I end up with an orthotist 2 hours away? So we were leaving the house 6am for a 9am appointment (cant take any chances with the GW Bridge in NY traffic).

It was worth it though as I did learn quite abit at the appointment

- Ive been worried about Ryans ring fingers developing contractures as they dont seem to straighten fully, but he assured me they still had full range of motion so not to worry

- He noticed Ryans left thumb was still abducted alot but he felt it may be a symton of his loose ligaments more than a brain problem, eg the thumbs have more of a range of motion than they should so they will naturally fall into the most stable position, and its also to do with muscle memory as they have become habit to be in the palms when resting.

- M, Ryans PT wanted to ask him about hinged afos as hes now doing more supported walking. Dr J was totally against this idea as he feels the material they use for the braces is flexible for that purpose. Actually the first thing he said when he examined the braces was "oh good, hes using his ankles correctly". At the ankle joints the plastic has turned white showing they have been bending while hes been walking in his walker.

Luckily Dr J's orthotist was able to alter the braces and exchange the velcro etc to make fit without having to totally redo. I was so not relishing the thought of having to pay another $2000 for new braces so this little break was a godsend.

What a week

2010-10-17T01:10:00.001-04:00

i did end up going to Vegas this week as Ryan was feeling better. While I was away at the trade show (always a joy no matter what city they are held in) John took Ryan to the pulmonologist. He was still wheezing a little so she upped his nebulizer meds. After this weekend we are to gradually wean back on the abuterol and keep the pulmicort to once a day.

Ryans getting really good at pulling up to his knees. Every time I turn around hes on his knees or sitting. So nice to see! He can get to his feet as well but we are not encouraging that just yet as his balance is dreadful. Below are some videos of his progress.

www.youtube.com/watch?v=ihGRdPcSepc

and

www.youtube.com/watch?v=_obxzncqAhs

On Thursday a respiratory therapist stopped by to drop of Ryan's cough assist machine. JB says it looks like something out of Dr Who (was that on American TV? or just British?). Ryan hates it! The mask has to held to his mouth with pressure while this machine pushes air into his lungs and pulls it out, and hes supposed to keep the mask on for 5 breathes. I cant see how hes ever going to get used to it. He screams bloody murder for the whole series of breathes :(

Wordless Wednesday

2010-10-13T20:33:00.001-04:00

ER visit

2010-10-10T01:41:00.004-04:00

Things have been a little crazy lately, I have so many half finished posts on our appointment updates but that will have to get wait until another day. We're pretty wrecked here, we just got home from the ER. We brought Ryan in tonight as he had been sleeping all day and had a gunky cough which wasn't being helped with albuterol at home. His sats were a little low, but luckily came back up after nebulizer and steroid treatments in the hospital. His chest xray showed some "thickening" around the broncioles probably related to a virus but no pneumonia. Just before we left the Dr asked us if Ryan eats alot of carrots, he really doesn't but its something everyone asks us when hes sick, he turns abit yellow like a mild jaundice ..... weird ......We were sent home with a regimen of abuterol and pulmicort, and to follow up with his pulmonologist. Now I have to decide whether to go to Vegas this Monday for work. Ugh, sometimes I hate being a working mother ........ but Im not whining because Im just glad we are all sleeping in our own beds tonight.

DETERMINATION!

2010-09-24T13:20:00.002-04:00

"Little by little one walks far" Peruvian Proverb

http://www.youtube.com/watch?v=RCeCJG-HN2s

What I "like" about this video is that it really illustrates how hard this all is for Ryan. Its strange as he doesn't have any abnormal movements, or spasticity or even really severe low tone to hold him back and even at 2 you can see that pulling up to a pretty low height is like climbing a mountain for him. Its good to have a visual though as I think sometimes if you have "typical" kids its tough to really see how hard all this is. But I love how this video also illustrates how determined the wee man is.

Feldenkrais

2010-09-23T13:47:00.002-04:00

Just some videos I wanted to share about babies development from the Feldenkrais' point of view. Truly amazing to me how so many things have to be in place for something that seems so easy to obtain. As I have said before Ryan is fighting his way through each and every tiny little marker, gaining his little inchstones.

http://vimeo.com/13598879

http://utahfeldenkrais.org/blog/babies-crawling/

IFSP meeting

2010-09-17T12:51:00.001-04:00

Today was Ryans yearly IFSP meeting. All went well, all his therapists are very pleased with his increase in progress the last couple of months. He has 6 months left of early intervention before he joins the school system so most of the meeting was about the transition, and the multitude of meetings we need to have before next April. Its a scary thought but luckily we have a really great programme for kids like Ryan pretty close by. Im still not too pleased with the fact he has to be in a school situation just to get services as I would much prefer he was home with Diana but Im sure it will all turn out fine ..... I hope.

Heres a video to show how hes progressing with his crawling. Its still very assissted but hes getting the motion going. He made alot of little gross motor inchstones the past couple of months, pulling up to knees everywhere, rotating while sitting, pushing up to his hunches without any assisstance, and getting up on hands and knees and rocking. Ryan is just determined to do every little inchsone that makes up a milestone but in his own time.

http://www.youtube.com/watch?v=YH6kEI4OyEY

Hes also liking the crawler a little better these days.

http://www.youtube.com/watch?v=_8CFhCDwDrE

Hes starting to feel much better now. I thought we might have to take him to the hospital on tuesday night but he started inproving and now just has a gunky cough. Will be interesting to hear what the pulmonologist says on Wednesday.

WOW, the weather JUST changed

2010-09-13T14:12:00.004-04:00

and we are in the throws of sickness already :(

Ryans down with a cold / flu like symptons, and a little fever. Very cranky with a bad cough. Now ordinarily this wouldnt be any great cause for concern, hey, all toddlers get colds etc and bounce back in a few days. But since the last hospital stay for pneumonia I take these things a little more seriuosly. Ryan goes downhill VERY fast without any warning. I guess Im also worried about the scarring thats still on his lungs from the last time. Note to self, must remember to ask doctors to be more clear and to show me the xrays, as I dont know if its a little scarring or something that can effect his lung function. Ugh. Sometimes a little knowledge is a dangerous thing. I want to go back to the days of pre CH when our worries were few and definitly not life threatening. Ryan is thankfully pretty healthy considering his extensive delays and wacky neurolgical system, I dont know how parents of more medically fragile kids do it. I have such a hard time dealing with things that are beyond my control. So I do all I know how to do, give him the nebulizer (cant hurt might help), keep the fever down and try to be one step ahead of the lethargy / O2 situation. And say a prayer that this indeed does pass without major incident.

Weekend in Cortland

2010-09-12T09:44:00.006-04:00

This weekend JB, Ryan and I spent the weekend with Johns niece, husband and 2 little girls at a waterpark resort in upstate NY. As Louise and co were coming from Canada the waterpark was perfect as its halfway between both homes, and Ryan LOVES the water so I thought it would be something he would find really enjoyable, something he can do on the same level as his cousins who are around the same age. With the kids now running and talking up a storm its hard to find things to do that will suit both families but water definitely fits the bill. Ryan can kick and "swim" just like any other 2 year old.

I love this pic as it looks like Ryan is telling Grace a joke!

Just a big kid!

Both looking very intense with their puzzles

swallow study

2010-09-04T10:32:00.004-04:00

Today Ryan had a swallow study and upper GI study done at Hackensack UMC. Hypotonia presents a very high risk of aspiration of liquid or food particles into the lungs. It stands to reason that if the muscles we can see on the outside are hypotonic then the muscles on the inside could well be too, preventing Ryan from swallowing effectively etc. As hes had a few serious lung infections in such a short period of time his pediatrician wanted to get an idea of how his swallow was. As the last chest xray taken in the hospital was still showing signs of illness the dr wanted to take another xray to see how his lungs looked now, after a couple of months. Turns out Ryan still is showing "scarring" on the lungs, and she advised we should see a pulmonologist to follow up. Ryan handled both the barium swallow study and upper GI test like a champ. From the tests the dr was able to tell us that his swallow looked fine in thin liquids, purees and crunchy textures although he had a very immature chew, and didn't use his tongue to move the food around inside his mouth. She recommended doing some oral motor therapy with him. He also has severe reflux due to a floppy sphincter muscle (or stomach valve) that is not closing properly therefore allowing food to come right back up after going down. She was surprised we weren't really seeing any signs of reflux, but he does hiccup alot, and spits up occasionally. My thoughts are that if the food is coming right back up then its not having time to get acidic therefore Ryan is not feeling the pain symptons usually related to GERD. The reflux however does pose an issue in that it can further cause aspiration and damage the lungs so we were advised to see a gastroenterologist to try to get it under control.

24 month appointment

2010-08-25T14:26:00.000-04:00

Well, better late than never, Ryan had his 24 month check up today although hes already 28 months. All went well, Dr B is very pleased with his development, and his good health these last few months. No hospital stays is always a plus. His height stayed at 80% and his weight went from 15% - 50% so that is great! His head measurement is slowing down but still growing, which is what one would expect at Ryan's age.

He wanted to add a few tests to the ones the neuro wanted to do, including Vit D and immuglobin (pretty sure thats not how its spelt). Hes testing all his kids for Vit D these days as hes finding 70% of the kids hes tested are deficient, which makes sense as the general trend here is to avoid the sun at all costs. However as Ryan is still on milk hes pretty sure he probably wont be deficient but we might as well test as hes getting the blood draws anyway.

I got a copy of Ryan's neurologist report from our last meeting, and was surprised to read that he felt that if all other diagnostic avenues don't turn up anything he would consider doing a muscle biopsy to look for mitochondrial diseases. This thought passes through my brain quite often, although Ryan doesn't present as typical for mito, Ive been around long enough to know that Mito doesn't really have a typical presentation, so I'm just glad Ryan's with a doctor who is willing to think outside the box. Yes, I know that doctors are trained to think horses not zebras when they hear hoof steps but some cases really ARE zebras.

Walker

2010-08-24T21:28:00.002-04:00

Ryan is starting to get the hang of walking in his walker