Bubby would like to say Thank You to everyone for their support on this special day!!! Whether you just took the time to read our blog, read something new on the pkskids website, shared information or did something to bring awareness....Thank You!!! It's all for him and his friends!!
So tonight I would also like to take the time to thank all the wonderful people who have helped Patrick over the past 2 1/2 years with his medical care and therapy! We have truly been fortunate with the people who are helping him!!
Just to give you a quick overview, most kids with PKS are in some sort of therapies. Each of their delays are different so their needs are as well. Most of them receive a mixture of physical, occupational, speech and vision. Some may get all of them, some may have one or two. The frequency will depend on their needs as well, once a day, once a week, etc. Some get these services at home, some at offices and if they are school aged, in school. The same goes for doctors appointments. They all see a range of specialists, from cardiologists, neurologists, etc. having these services in place as early as possible is so important for these kids. Getting them to learn something as basic as holding a toy for longer then 30 seconds can take them quite a while. For instance, Patrick could hold a bottle at a year, but he is just now picking up certain toys and bringing them to his mouth. But thats because of his therapy and repetition, repetition, repetition.
So as most of you know, we moved back to Michigan from Virginia a few months ago and it was one of the most difficult decisions we had to make. We had established our lives there and made so many friends that are now part of our family(which I will discuss later because they deserve their own blog). But one of the scariest things was re-establishing everything we had in place for Patrick. The time we put into it, getting him comfortable with the people who work with him and going through the whole process of IEP's, early intervention and the list goes on. But at the end of the day, it was something that we couldn't control and we had to move. So we had to say good bye to our favorite therapist, Ms. Brenda and our favorite coordinator Ms. Sue. These 2 women really got us set up with all the things that we didn't realize we needed for Patrick. When you have a child with a disability, it is overwhelming trying to figure out what the resources are out there and how you get them. These two took Tim and I under their wings and just helped us with everything we needed!
Patrick in his stander for the first time with Ms. Brenda. Tim wasn't too excited about it, he thought it looked like the thing they used to transfer Hannibal Lector in Silence of the Lambs. Bubby liked it:)
Now Ms. Brenda was just perfect for Patrick!! She was so patient and calm and learned his personality so quickly. Let's face it, Patrick is his fathers child. He has that Irish, Tim Kelley temper. If Patrick was able to, he would throw chairs off balconies after watching Tigers games, just like his daddy. So maybe I should make that his goal on his next IEP. So anyways, Ms. Brenda knew when to push him and when he was done, without me saying a word. She could get him to do things that Tim and I couldn't. She was great. For her, we are truly grateful! Thank you Ms. Brenda!
Moving back here has turned out to be great for Bubby. Patrick is now getting into a new routine with his therapists here. He is really enjoying his teacher Ms. Carly, who is very sweet and sings songs with him, which he LOVES!! She comes once a week and then we will start going to class with her once a week in January. He has physical and occupational therapy alternating every week. Ms. Stacy and Ms. Karen have been awesome as well.
We have been over the moon happy with the healthcare he has recieved from the University of Michigan...go blue!! They are so efficient!! But the biggest shout out for them, has to be that every doctor we have seen has had the best bedside manner with Patrick, which lets face it, we don't see everyday. He saw the head of genetics in Ann Arbor a few weeks ago and he was tickling Patrick and playing with him. We were amazed.
One of the worst feelings in the world is leaving an appointment and feeling like the doctor didn't have time for you or that he has a disability, so there's not much they can do. I have had this happen. Then there's the very common occurrence of having to educate the doctor on his disorder. I walk in with my bubby binder full of his medical records and have to explain what it is. THIS IS WHY ALL THESE PARENTS ARE WORKING SO HARD TO BRING AWARENESS TO PKS!!!!! When there isn't even enough information for doctors, then we need to do something!!
This is where I thank CHoP-Children's Hospital of Philadelphia, who takes the lead on research. They are doing great things and are publishing articles in the American Journal of Medical Genetics for December on PKS, This is exciting!!! Huge thanks to them!!! Here is the link to pkskids if you would like to read them:
http://www.pkskids.net/medicalresearchinfo.php
It takes a lot of people to help raise our little PKS kiddos and these people are amazing at what they do!! We are truly thankful for having them to help Patrick learn the basic things he needs in life and keep him healthy. And they are only part of the puzzle....
With that I'm pooped! PKS day was exhausting! Nighty Night:)