I have been meeting lots of new moms lately that have children with special needs. The ones who have blogs have really great descriptions and updates of what is going on with their child, and it inspired me to do the same. I really haven't written much about Skylar's special needs in the hopes that one day when she is looking back at our blog she would remember fun times and that she had as normal of a life as possible. The reality of our life right now is that even though we try and keep it as "normal" as possible, it still pretty much revolves around doctors appointments and therapy for Skylar. Sweet Savannah is such an angel and a trooper and I hope that one day she is a stronger person for experiencing everything with Skylar. So, hopefully this can serve as a description of Skylar's story for new families we meet or for people that we haven't kept up to date very well. I am going to try and figure out how to make links on the right side of our blog and will post any updates or news about Skylar there in the future.
Skylar will be 3 in May and is currently diagnosed as having a Developmental Delay. She has both cognitive and motor delays and currently has the biggest delay in gross motor skills. She has very low muscle tone in her whole body. Her characteristics are similar to some types of Cerebral Palsy. She did not sit up by herself until 15 months old and did not crawl until 17 months old. She cannot stand independently or walk. She can stand at a surface and cruise but cannot pull to a standing position by herself. She has two different walkers that she is learning to walk in (but she doesn't LOVE either of them very much). She has a pretty good vocabulary and learns new words everyday, but still lacks the communication/understanding skills of a typical two year old. She has the sweetest heart and the sweetest smile and loves people!
Here is a little bit about how we got where we are today...
Everything with Skylar's pregnancy and birth went smoothly and she appeared perfectly healthy. She ended up crying almost the first two months of her life. She had colic and feeding issues, but we finally got her on some special formula that really helped. She also had terrible reflux that our GI Dr. actually said was one of the worst cases he had ever seen. Around 4 months we started noticing that she wasn't doing things that a typical 4 month old should be able to do, and by the time she was 6 months old we were fully immersed into our new life with a child with special needs. We started seeing multiple pediatric specialists that consist of: GI, ophthalmology, genetics, neurology, ENT, ortho, and developmental specialists. We also started with Early Intervention services, and Skylar has been receiving 4-6 therapies per week ever since then. She has come a long way in the therapy world over the last two years. She used to whine and cry the entire hour and not want to do anything that we were trying to work on, but she is pretty cooperative now, except for a few two year old moments still thrown in there sometimes. She receives physical, occupational, and education therapy. Thank goodness she has "graduated" out of feeding therapy (which was my least favorite!), although we still struggle with feeding and weight issues. It has been suggested multiple times that Sky have a feeding tube put in because she has such poor weight gain, but we are still trying to put it off as long as we can. We calorie boost her food as much as we can, but she can't eat the average volume of a typical two year old. Her low muscle tone makes it harder for her to chew solid food and she also tires out quickly from eating.
She has had multiple genetic tests done that have all come back negative: Retts Syndrome, Angelmans Syndrome, Fragile X Syndrome, Mosaic Downs Syndrome, and a few other widespread chromosome tests. She has also had MRIs and EEGs and nothing significant has presented that would help us find a more specific diagnosis. So, basically we still have no idea what is "going on" with Skylar or why.
Through this whole process we have become experts at all things insurance related and have learned to have patience with all things doctor related. We wait sometimes months for appointments, then wait sometimes hours in the waiting room, then wait for results. Needless to say, it has been an acquired patience. We definitely went through the panic phase where I thought we were going to get immediate answers or a quick "fix" and couldn't imagine having to wait two months to see a doctor. I was researching everything constantly and could probably still recite from memory the development charts from What to Expect the First Year. As time went by we realized Skylar's development was not something that could be quickly fixed with some miracle drug or procedure and we are still trying to learn what our version of a normal life will look like.
One of the hardest things emotionally is the loss of expectations. I am realizing that I had these certain expectations of what our kids/family would look like that I didn't even realize I had. Thats the funny thing about expectations....they kindof just grow and form in your head without you knowing and then it takes them not being met to even realize you had them in the first place. We have no idea what to expect with Skylar in the future, but we hope for the best. She continues to make progress every day which keeps us hopeful. We also see lots of kids every week that are not as fortunate as Skylar, which helps keep our perspective thankful for her health and for her happy spirit. She pretty much wins everyone she meets over with her pink glasses:) Thank goodness for Tyler who is such a great dad and has an unconditional amount of love and patience for Skylar. I could not do this without him!
Next week we are starting a new intensive physical therapy program. It is 3 hours a day, 5 days a week, for 3 weeks. We will be using some new therapy techniques that Skylar has not tried before that include 'suit therapy'. There is a great program in Michigan called EuroPeds that also uses suit therapy. They have a good little video on their website that describes the process. If anyone wants to check it out....
http://www.europeds.org/
Skylar will be going to Richmond Hope Therapy (http://www.richmondhopetherapy.com/) The founder of RHT was actually trained by the person who started the program in Michigan. It is about a 40 minute drive each way, but it is a lot closer than Michigan, and we are excited there was an opportunity like this for Sky right in our own city.
Our next big event for Skylar is a trip to Atlanta sometime this spring for a muscle biopsy at the medical neurogenetics lab there.
I will keep you updated on Sky's progress and appreciate your prayers for her!
Drawing while we wait for flu and rsv test to come back...
A few days later with Savannah waiting for tests to come back...
Poor sick girl who I didn't know could actually be so still
Trying to get Savannah to wear her mask...this lasted all of 5 seconds. We ended up having to just try and hold it as close to her face as we could while enticing her with Mickey Mouse Clubhouse.
Happy Valentines Day! Feeling good enough for a little smile...
Sky loving her musical Valentine card
