Monday, December 10, 2007

Feeling Blue.....

I always dread physical therapy day lately. Rhett has met all of his goals that were set in his IFSP this year except one......walking.

This has been weighing heavy on my mind lately.

The biggest reason being, that before he was overdosed he was taking 2-3 steps at a time, and was very stable. Now he is just so off balance, and his right side drags so much. I know that he is just fine with doing his bear crawl forever. But I am sad that so many of his peers his age, both typical and with Down Syndrome are all surpassing him in this milestone.

I know I should be thankful for all that he does do, and I am, I am so very thankful. He is one smart little tyke. His speech and signing is amazing, there is no question about that. I know many people would give up walking for communication. But some days I just want the whole thing.

I am sure it will come in time, and I just need to be patient, but it is so hard when this is the one thing I have wanted him to do for so long; and to know that he was doing it almost a year ago, but has not gained that skill back yet makes me so sad.

Maybe it's the fact that I am dragging him all over still. He is outgrowing his stroller, he weighs 31 lbs, and is a dead weight to carry. You know how a sleeping baby is 10x heavier than a baby who is awake? Well picture carrying that heavy sleeping baby who is wriggling all over and leaning over trying to watch your feet as you walk. Rhett does not support himself at all. My 5 year old is easier to pack around than Rhett is.

Does your back hurt yet? Cause mine is killing me.

So after the holidays I will be on a quest to find a light weight stroller that holds a bigger child that folds up compactly. One that doesn't have a tray on it, or one that at least comes off so I am not trying to maneuver his legs in and out of a tray. Did I mention that he is too wide for an umbrella stroller? WAY funny to see him scrunched up in it. He is built so much like his dad, very broad shoulders. We have to buy 2T shirts to get them right for his shoulder area. Plus an umbrella stroller doesn't have a basket underneath. We have to have a basket for the diaper bag, and the oxygen.

We have a really nice Jeep jogging one that he fits in very well, and I love it. But it's so big and bulky that I can't put the third row seat up in the back of our Durrango. We also have a cute Fisher Price Utility Wagon that is great too, and it folds flat, but I can't take that into a shopping mall or Dr. office because it is too wide.

So, If any of you amazing special needs mom's out there know of a really great stroller, send your advice my way. Rhett, and my back will thank you for it!

Both his PT and his Doctor don't see him walking any time soon, so I think we are in this for the long haul.

I hope some day he will walk, but until then, I will treasure his bear crawl. I am sure I will miss it once it's gone.


Niksmom said...

does rhett get medicaid? go here: and cgeck out the strollers. talk to your doc and your pt about prescriptin and letter of medical necessity and make them order one for rhett. it's a back health hazard for you to use something not specially designed to accommodate rhett's needs. we are in the same spot w/nik's stroller. he's outgrown his seating system and the umbrella stroller can't hold his stuff. most of them flip over when you take the kid out if there's anything hanging on the back. good luck!

Brent & Jodie said...

I have to just give you a pat on the back! Also, just so you know, Tyler is 3 1/2 and not walking but he will! I know he will. It is just a matter of time. Same is true for Rhett.

I also hear you on the whole stroller thing. Trying to pack Tyler around is a nightmare!!

my--four--sons said...

It is very hard when they don't meet their IEP goals. Every time we do a new IEP I always set up a goal that my guy will be able to talk before Kindergarten and well my little guy is turning 5 next week and he is still nowhere close. I know how hard it is but I always try to focus on all of the things he has accomplished and it makes all of the rest seem like little bumps in the road.

Carey said...

hang in there girl...and I will tell you I do miss the bear crawl! I don't even think I got it on video. Do you have him on video, do it now if you don't!!! I was checking in as I saw your post on T21, hoping he's okay!

Kaden's mommy said...

I understand exactly where you are coming from. Kaden is now a little over three and is just now able to walk holding somebody's hand and walk some with a walker, just not completely on his own. He still can not stand without holding on to the furniture and just recently started pulling himself up. When it comes to taking him around I use the jogging stroller, and prefer that over a wheelchair, besides that the stroller is much lighter than the wheelchair.

I have come to the realization that Kaden will do things when he is ready to do them. I am sure Rhett will began to walk when he is ready. It shows in the video you posted that he is trying and all it will take is some practice. I don't know how Rhett likes holding on to your hands to walk, but that was the only way Kaden would do it to start with. He didn't trust the walkers or holding on to furniture, he just wanted mom and/or dad's support. Hang in there, you are doing a wonderful job and I am sure that one day we will be watching a video of big boy Rhett walking around getting into mom's stuff. Take care, thinking of you always. Amy

Marla said...

I really hope you find an affordable stroller for Rhett. It must be very difficult for you physically. I will be interested in what you find. We had looked into a stroller for Maizie since she tires so quickly and refuses to walk after a while. But, we have never qualified for any aide and they are very expensive. Keep us posted please.

Shannon **Gabi's Mom** said...

I was coming to see if there were any updates on Rhett since his choking episode. I hope he's doing okay!

Kari said...

Aww Pam I so feel your pain! My guy started walking at 16 months. BUT! He never walks where I want him to. Which means I have to carry him most of the time. If we are out he has to be in a stroller or carried he does the human noodle and will not walk with me anywhere. He's almost 4 OMGoodness he's almost 4 :( I was having the same issues with strollers as you. I too have a huge jogging type one but it's so huge and hard to lug around. What I bought was made by Quinney. It is light weight (I can pick it up with one hand no problem) and folds up smaller than my umbrella. It is large and is on a good enough angle Trist's head don't fall forward if he falls asleep. (It has a four point harness like the car seat) Here is a link to it. I bought mine at sears for about 50 bucks less than quoted here.
Tristan is 35 pounds and will be able to use this stroller for a long time still.
Keep your chin up friend :)