Monday, October 12, 2015

Day 7 The Importance of Therapy


Therapy. We eat, breath and live therapy. Occupational therapy. Physical therapy. Speech therapy.

The boys both get private and school therapy for OT and ST. Peter gets PT privately and through school. Kai doesnt really qualify for PT. He never really has. Kai's strong points are his motor skills. Even in ECI(6mos-3 years) he only received it once every 2 months. But Kai does get private PT. Our awesome insurance does not cover ST for Down syndrome. The policy specifically lists Down syndrome as something they do not provide ST for; even though speech is typically the area they have the most problem with due to low muscle tone(affecting the tongue).

Therapy is probably the single most important thing for children with Down syndrome.

I have a step-uncle with DS. He is either late 50s or early 60s. He has never had a day of therapy. He is non-verbal and 'low functioning.' He babbles and laughs a lot, but nothing anyone could ever decipher. Even after 10 years he remembered who I was. That was kind of awesome. He even came to the Buddy Walk with us 2 years ago. He deserves to be celebrated after leading a life of not being cherished.

Peter, our oldest son, did not start any therapies until 5 and a half years old. Why? Because we adopted him from a Ukrainian orphanage December 26th, 2011 and he became an American citizen January 12th, 2012. He had many health issues that had to be addressed prior to starting therapy. But we started it as soon as we could.

Kai started OT and PT at 6 weeks old. He had open heart surgery at 10 weeks old and resumed therapy at 12 weeks old.

So, my uncle is non-verbal(except non-sensical babbling and laughing) and very low functioning(not my term), not really potty trained but can perform basic skills of dressing himself. He needs assistance bathing properly and other hygienic needs. He seems happy and content with life, but I think with therapy he could have reached a much higher potential. But being born when he was, he was lucky that he even stayed with his family and not shipped to an institution. He is a happy guy :)

Uncle Keith

Peter. Peter is significantly globally delayed. Peter didnt start therapies until 5 years old. Peter spent most of his first 5 years in a crib because the orphanage thought he was very ill. And he was because they waited until he was 3 or 4 to do his open heart surgery. We arent sure when he had it. He had severe pulmonary hypertension. He was also 33-34 weeks premature. I have no idea if he received too little or too much oxygen during all of this. Both can cause damage to the brain. Peter has significant delays, as was expected. He was 5 years old and weighed 24 pounds when we brought him home. He wore 18 months size clothing.
It took about 2 years for Peter to start walking, at age 7. His legs were so stick thin with no muscle or fat on them at all. His feet pronated so badly that he basically was standing on his inner ankles. He did pick up about 5 or 6 words right away. Mama, Papa, Ball, eat and drink. But then he lost them. I guess due to motor skills emerging. He is partially potty trained(more so than Kai is), he will go if you take him but does not know to tell you he needs to go.
He can use an iphone and ipad quite well, but still eats crayons. Initially he ate pretty much anything because he had been starved so long, but he has become more discriminant with his food. He has yet to start any real academics in school; he is in 2nd grade. He can not complete a 3 piece puzzle because he throws the pieces. A lot of it is compulsive behavior. He has started a new medication that helps him sleep better and is supposed to help with compulsive behavior. It is not a CNS stimulant, those do not work for him, at all. It has helped tremendously with the throwing. I do believe that Peter will get to a point where we can work on more academic based work. We just work slow and steady. He's progressed SO much since he came home with us, so please dont misunderstand me. He is a resilient and amazing little boy. We are proud that he is our son.

Peter when we brought him home
5 years, 24 lbs

Progression pics

Kai started therapy at 6 weeks old. Kai still gets OT at home and school, ST at school and PT at home(which we are hanging onto with the skim of our teeth)
Kai has always been good with motor skills. He sat at 10 months. He crawled at 7 months, he cruised at 11 months and walked at 18-21 months.
Kai ate reallly well too. Kids with DS often struggle with feeding to the point of needing feeding tubes or buttons. He did great with a bottle and purees and was eager to start table foods. Then he started choking and vomiting table foods. He had a tongue tie. I asked them in the NICU if it needed to be clipped. They said No because he ate fine. I asked the pedi. Same answer. But as we started having trouble with table foods, I began to ask more doctors, like ENT, GI, feeding therapist, OT. All said No. It was because of the DS.

But this was one of those things that I 'knew' in only a way a mommy knows. Unfortunately with a diagnosis of DS, if it is an issue common with DS it is immediately chalked up to that with no further investigation. We started a new private therapy company that was an at home therapy. The OT originally only came for Peter because that was all her schedule would allow. We talked about Kai some and his feeding issues and my concern with his tongue tie. He was 5 and still eating eating Gerber Stage 2 purees! She said she would add him to her case load. Thank you Thank you Thank you Romo!

After about 5-7 months without making much progress, she agreed that the tongue was probably the issue. He could move his tongue laterally so he was not able to move food around in his mouth. The fact that he didnt talk at all or eat any solids kind of pointed to that too. So I scheduled an appt with an ENT. Not our ENT, she was on maternity leave. The ENT agreed it was a severe tongue tie and should be clipped, but she did not feel it would enhance his ability to eat or speak, those were cognitive delays.

Um, thank you. I didnt ask you for a neurological evaluation on my child, whom you have never met. I asked you to look at his tongue. So 3 months later he had surgery to have it clipped.  It turned out it was so severe that it was attached all the way to the tip of his tongue but over time he had stretched it which is why he could stick it out! That was definitely a mommy 20/20 hindsight moment. ALWAYS follow your intuition!

Within 2 weeks he was eating solid table foods. And within a month he start approximating and saying some words clearly.  Always listen to your inner voice and your child. Even if they are non-verbal, they can tell you so much in other ways.

But Kai having therapy so young facilitated him meeting his milestones in a reasonable timely manner and taught me how to help him with things like strengthening his core, not rocking back on his sacrum and so much more. We also have learned to greatly appreciate the small victories. We have celebrations for things most people take for granted, like eating his first piece of birthday cake when he turned 6.

So yes, early intervention and therapy make a HUGE difference in our children's over all physical and cognitive abilities. It lays groundwork for the future.

Day 6. Milestones and the First Two Years


Yes, I am 7 days behind on my 31 for 21. I debated on writing one post for all 7 days but I feel like that is cheating. It is kind of cheating that I am posting 7 in one day as it is.

Today, which is really last Tuesday, I want to talk about milestones.

After finding out Kai had Down syndrome at 18 weeks gestation, I threw away donated all of my parenting books I had bought and been giving. They no longer applied to me or my unborn son. Why read up on material that would not pertain to him? To disappoint me further? To make feel worse when he didnt meet milestones on the time table that Dr Sears or Spock or whoever he is says that he should? The one good thing was that he was my first baby, so I really had no idea when babies were supposed to be doing what at which age range.

So along came Kai on November 12th. I was instantly in love. He came home after a 10 day NICU stay due to possible infection. Although his culture did not grow anything they wanted to complete the 7 days of antibiotics because of his congenital heart defect.

ECI(Early Childhood Intervention) came out around 4 or 5 weeks to do an initial evaluation on him. We started OT and PT at six weeks. I loved ECI. They came to our home, so it was very convenient. If we had went with private therapy he would have probably received more sessions as ECI is government funded. But Kai progressed well, so I can't complain.

So here's the kicker. Our kids are born with essentially the same brain as a typical child. There are a few variations like being a bit smaller, but things like dendrites and neurological pathways, etc, are there. But around 5ish months, they begin to lose those things slowly. This is why most babies with Down syndrome (who do not have complex medical histories from the beginning) seem to meet milestone fairly on par with their typical peers. The noticeable differences start around 2 years of age. I learned this in an abrupt manner.

I had contacted a local group when I was pregnant and found out about Kai having DS and we met the family for dinner at a restaurant so we could meet their children, one of them having DS. It was a great meeting. Opened my eyes quite a bit. He was 5 and did a lot of typical things a 5 year old would do and interacted well with his family. So, after Kai was born we battled one of the common occurrences in children with DS, chronic fluid in the ears. He had his first set of ear tubes at 6 months old. On one of my many visits to the ENT office, I ran into the mom I had met for dinner. She had her son in tow and was leaving as we were waiting for our appointment. We chatted a bit and it was the first time she had seen Kai. She asked how he was. I told her he had already had his open heart surgery at 10 weeks due to congestive heart failure but he bounced back quickly. He was probably around 8-10 mos old at the time and I told her he was doing so well in therapy and he is not even behind on any milestones.

In a slightly irritating voice she told me, Yeah, they meet all their milestones pretty much on time until 2 years old. Then you will see bigger development and cognitive delays. The information was good to know; the way in which she delivered it was not. Ive met and helped many new families with babies with DS when I worked in the NICU and never would I say something like that to them in that tone. It was a tone of Yeah Yeah, I hear this BS all the time. Your kid isnt special. He will be behind and delayed just like every other kid with DS.

In that moment I was actually emotionally shattered. Because yeah, I did think maybe I hit the jackpot and Kai would be one of the ones with super mild delays. We all secretly want that. None of us want our kids to delayed, especially severely delayed. So my feelings were really hurt. Maybe she was having a bad day. Maybe the ENT gave her some not so good news. I dont know. I dont particularly hold it against her today, I just know I will never state it to a new mother that way.

I kind of feel like we are given those 2 years before the noticeable gaps so that we have time to adjust to having a baby/child with Down syndrome. We expect them to come out and be severely delayed, or just dont know what to expect, and then we see that they can and do learn with a little extra help and time. That allows us to focus more on them being our baby, our child, and not a project to work on day in and day out to try to keep them equal with their peers. It is like an adjustment period. It is still difficult when the development gaps become bigger and bigger, but by then you kind of expect it and you know that they will reach those milestones. 

In their own time.

Tuesday, October 6, 2015

Day 5 Please Don't Feel Sorry for Us


When I tell you that I have 2 boys with Down syndrome, please dont feel sorry for me or my family.
Both of them were very much wanted. And we knew that both of them had Down syndrome.

We found out at 18 weeks that Kai had Down syndrome. We chose Peter because he had Down syndrome and then flew halfway around the world to Ukraine to bring him home.

So please, dont feel sorry for us. There is no reason. Our family does the same activities as families with all typical children do.

Day 4 It's Just an Extra Chromosome


Really. That is all Down syndrome is. An extra chromosome. Many of us are probably walking around with a missing or extra chromosome here or there, but it doesnt affect us the same way DS affects our kiddos.

In 2000, researchers sat down and coded every gene that is found on the 21st chromosome. Those genes are what parts of the human body that can be affected. It can affect certain physical characteristics, like almond shape eyes, missing or small nasal bone and the ever cute Sandal Toe. It can affect different organs and muscles. Kids with DS have generally have low muscle tone all over. Does this mean they are weak? Heavens no. It takes 6-8 people to hold Kai down to draw blood. He is by no means weak. But when I pick up Kai or Peter, their bodies just melt into mine perfectly. Low muscle tone just attributes to some milestones that may take longer to reach until muscles, like core muscles, are strengthened.  Kids with DS have loose ligaments and joints. What does this do?

Means he can sleep like this

And he can be bundled like this

There are many other things it can affect from cognition and predisposition to certain illnesses. It does not mean your child will get all those illnesses, just a higher chance. Id love to go into it but Ive got to cook dinner for my 4 minions.