Tuesday, January 31, 2012

Some changes for Ryder

Ahhh-- I have a nice quite moment to sit down and update you:) I don't get many of these- and I'm not sure how long it will last so here it goes--

The ankle braces are a "no go" now. They were great the first few days and then Bubba modified his walk and started walking with both feet faced inward (pigeon toed). I'm working with the ortho and his physical therapist to see were to go from here. He now thinks he can run, but his upper half seems to go faster than his bottom half leading to a lot more falls and owies:)!

He had a rough weekend. He was really constipated--again. There seems to be a pattern of this now. Long story short- he wasn't digesting his food properly and stomach content came out of his feeding tube (tons of it) even though he hadn't eaten in over 2 hours (just a few small cookies at that!) He had a bowel blockage. After several doctor calls we where able to resolve the issue in the next 3 days. He was on magnesium citrate which gave him diarrhea that just went around the blockage. We also had to give him 3 days of suppositories and extra fiber/miralax. All seems okay now, but he wasn't a happy camper at all! We've learned since then that his flow rate on his pump was way to high and his formula w/fiber is hard on his tummy and causes constipation. We now add water to the formula, slowed the rate WAY down and are slowly introducing extra fiber (in green smoothies/prune juice) via tube. One thing I did learn in class is not to introduce fiber to quickly or it will cause abdominal pain.

Ryder's stoma (area around G-tube) became really irritated. It was almost like a horrible, raw, blistered diaper rash. I will skip the reason for how it became like this--since I know it was a lesson learned (ugh!) Anyways, that is now cleared up and looking good. Ryder is trying to adjust to a continual tube feeding during naps and bed time. He likes to sleep on his tummy, but the tube gets kinked and the alarm beeps.

I'm looking into music therapy for Ryder, which I know he'd enjoy. It cost a lot out of pocket though so I'm still looking for other programs that may benifit him. Next month, we will start the transition into preschool! I still have to chuckle when I picture my little man waddling into a classroom with a backpack on--haha!!

Thursday, January 12, 2012

Back on the move!!!

I just wanted to update everyone before I have to buckle down and study again....my next block starts next Tuesday. Ryder and his brothers had a wonderful Christmas! Ryder got a ride on big truck. He's still a little small to reach the pedals, but he loves it anyways! It's funny because he tries to ride on any car--even the little matchbox cars :) Such a boy! It seems like we have headed off a few illnesses in the last month--luckily. I can see the beginning signs of when he is getting sick much easier now, so we can take care of it before it becomes an issue.
Ryder had a weight check last week and he gained 13 oz in 1 month!!!!!!! That was such wonderful news. His GI doctor was getting concerned because he hadn't gained anything in over 6months. We increased his GI tube formula feeds and thankfully got amazing results:) He also had another swallow study, which really wasn't productive. Ryder only cooperated with a few sips, so the conclusion was that he still showed he was having trouble swallowing and needs to stay on thickened liquid. The whole study seemed silly because they didn't get hardly any info to base it off of. I'm a little worried because he still occasionally coughs on nectar thick liquids and I'm thinking we will be increasing the thickness soon--but for now, we'll just keep an eye on him.
 Ryder just got his first set of AFO's (braces for his feet). It's only been a few days, but I already notice a difference!! Ryder curls his toes and pronates (turns to the outside) his feet to help him keep his balance while he walks. These AFO's force his ankles/feet to be straight and also helps with him not curling his toes. He now bends his knees when he walks and his gait is closer together:) I got a padded helmet from my friend Tammy, which has reduced the amount of bumps on his head as well!!! That really has come in handy. I always am worried about concussions with the amount of times Ryder falls and bangs his head.

Ryder continues to increase his signs as well (sign language) He just learned Mom in sign:) It is definitely modified, but yay!!!! He can sign Mom:) He has been my little shadow since I've been on break from school. I'm going to miss him so much when I start back next week.

During my break we went to the Ryan House to visit our friends. We just sent in our packet so that Ryder and our family can stay their also. This place is amazing!!!! It will be a nice little get away for our family. It is a place I would love to work at as a nurse in the future as well:)

                                                I love this knitted froggy hat!

                                  Ryder used to be so scared of this goose! He finally was brave enough to give it a kiss  over Thanksgiving break at Uncle Joe & Aunt Laura's cabin in Flagstaff:)

I love marshmellows & I know how to throw the cutest temper-tantrums until Mommy gives me one too!!

The last exciting news is that Ryder was approved for respite (months ago), but I finally found a company and provider:) I did in home therapy for 8 years with a little boy many years ago. He and his family have remained in our lives and are amzing, wonderful people. Anyways, this boy's (not so little anymore--19) sister will be providing respite for Ryder. I am thrilled!!!! It's hard to trust just anyone to watch a special needs child, but I can rest at ease knowing he is in great hands:) That's about all the updating I can think of for now!