Well, it's been quite a while since I have updated here. Luckily things have been going well overall. The end of July we spent some family time in California and then the second weekend in August, we spent some time at the Ryan House in Phoenix. Both trips were fantastic. I have been working on blogging the full story of both trips on our family website, but here are a few fun pictures. If you want the whole, long story you can visit www.lifeontheclaytonfarm.blogspot.com Hopefully soon I will get all the pictures up there.
Bryce loved everything about the ocean from the first moment.
Bryce and Jacob resting on the beach.
Annalise warmed up to the water once she saw her brothers having fun in it. She wasn't so sure at first.
On the pier at Seal Beach. Bryce was too busy looking at everything around him. Couldn't stop to look at the camera.
The Ryan House was amazing! There were many wonderful people there who enjoyed playing with our children and making sure they had a fun time while Mom and Dad got some much needed rest. We are already looking forward to our next visit!
Spencer sporting the treasures he found in the dress up box. All three of the older boys enjoyed dressing up...especially in the pretty pink clothes that they had. Lots of fun stuff that we just don't have around our house.
Annalise sharing a pop tart with Dad in the amazing Kitchen. I fell in love with the kitchen here.
Bryce with Kasha, one of our favorite people at Ryan House!
One of the therapy dogs that visit while we were there.
Jacob and William trying out the helicopters they made in the art room. They are standing on the top of the wheelchair accessible play structure in the court yard.
Annalise LOVED this little car! It was a great way to get her around the place.
Those were both good trips that will provide us with lots of great memories. Once we got back from Ryan house, real life began again. The boys are all back in school now. =( Bryce, as usual, is loving school. His teachers, aids, and therapists are all so amazing. He is in the same preschool class as he has been the past year and a half. I can't believe he will be starting Kindergarten next year and Annalise will be going to this same preschool!
Last week Annalise had an appointment at the wheelchair clinic and one with a developmental pediatrician. We were able to order a stroller type chair for Annalise that should be here within a few months. Hopefully her walker will come this week. She is still walking some, with help, but it continues to get harder for her. Hopefully the walker will arrive while she is still able to use it! Her favorite phrase right now it, "kick the ball". She often wants to walk around the house while holding my thumbs (she has her own, exact way of doing this), while "kicking" a ball. I need to get someone to video her doing it. She has also gone to a little frog hop in order to get around. She doesn't really crawl anymore. Her upper body strength is just not enough. She just moves her arms forward and hops her backside up. What is cute, is that she has started saying, "ribbit" as she hops. I guess because people always say it looks like a frog hopping. It is super cute although sad at the same time.
She is beginning to really struggle with feeding herself as well. I have ordered some adaptive dishes, silverware, and cups that will hopefully make it a little easier for her. She will work at it for a while and then say, "Mommy's turn" and hand the fork or spoon to me. She always wants to at least try on her own first though. We have to watch her really closely too since she has begun choking on some items. Water is the worst right now. We will need to start thickening her liquids soon I'm guessing. She continues to talk up a storm. She is babbling most all the time. Sometimes we can understand her and sometimes we just listen and answer as best we can. She has learned quite a few signs that come in very handy. She is so much fun to be around! She has quite the little sense of humor. The boys just love her to pieces!
Bryce has been doing really well over the last few months. He has remained pretty stable, which in the case of Leukodysrophy, is a great thing! We are currently waiting for a new seat shell for his power wheelchair. Unfortunately it is unusable the way it is right now. It is also a bit too hot right now to be outside working with him in it, so I think once it gets cooler and we get the seat, we will begin again.
Bryce had an appointment today at the spasticity clinic. They are going to keep his meds the same for now. They are talking about doing Botox in his arms to help with that, but I have read/heard that botox can be very dangerous in children with AGS, so the doctors are going to do some research first. I'll be doing a bit of my own in the mean time!
When I was loading Bryce into the van today, I saw Dr. Narayanan coming down the stairs of the building. He came over to the car and talked with us for a while. He asked how the kids were doing and said that he hasn't heard from Dr. Crow yet. He said that he will email him this afternoon and see what he can find out. Hopefully we will hear something soon.
5 comments:
What kind of adaptive dishes did you get & where from? Sounds interesting! I hope the walker comes in quickly! I'd love to see a video of Annalise talking!!!! Ry is babbling more and more--I'm crossing my fingers that I'll hear him call me Mom someday soon:)
Glad Bryce is stable!!!
xoxo,
Denise
We loved Kasha at the Ryan house too she held Gummy all day everyday I'm sure. She was so caring and loving to the kids. We are going to the Ryan house next week. Where is the spasticity clinic? We have never been referred there. We have just always had the neurologist take care of the med's for that. But we have never had a developmental pediatrician either since no said we needed one. I guess it's a few less appointments for us. That is great news that is stable right now & loving his school. Annalise sounds so adorable love "Mommy's turn" Hugs to your beautiful family
Denise, we got her a set of adaptable utensils which are a flexible fork and spoon that can be bent to the correct angle for her. We also got a scoop bowl and dish which are little dishes that suction to the table/tray and have sides that curve up and over a little so that it makes it easier to "scoop" the food onto the spoon. We also got the flexi-cut cups which have a cut-out on one side of them so that she can drink out of it without tilting her head back quite as far. I wanted to put some pictures on here, but I can't figure out how tonight. I got some of the things from Amazon, but you can also see them at www.beyondplay.com or www.achievement-products.com
Her speech and OT helped us know what would work best for her, then I just shopped around a little bit for the best prices.
We go to the spasticity clinic through CRS. We see Dr. Kwasnica there. Our neurologist referred us to her when we were having such a tough time getting Bryce's meds and breathing issues straightened out. The developmental pediatrician is also through CRS. We will just see her once a year for each kiddo. She basically is there to make sure we are getting all of the services that we need. It is kind of helpful, but it does add to the number of appointments. I don't really like working through CRS, but the doctors that we have there have all been fantastic, and for now it is the only way to see our neurologist...which makes it totally worth it! Who is the neurologist that your children see? Have you met with the new GI yet? How did that go?
Have a great time at the Ryan House! I can't wait to hear all about it!
We see Dr. Bernes at PCH. We haven't yet meant our new GI Dr. we are scheduled for September I have a friend that just started taking her son to Dr. McOmber and she REALLY, REALLY likes him as he is been very supportive of her doing a blended food diet. So I look forward to meeting with him.
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