I know I have been slacking on the updates! We have had a very busy week being home and settling back into our “normal” routines. It is hard to find the extra free time I can call my own, but I’m determined to finish this update today so all can hear how miss Colbey Raye has been since she’s been home. It will be one week tomorrow since she was discharged and on Thursday 3 weeks will have already passed since her surgery! I’m amazed at how fast this week has gone by, I feel like I have a million and two things to say and share, but I will try to limit myself as to not create a novel for all of you reading. Okay, here it goes!
Last week on wednesday Colbey Raye was discharged and we headed home, feeding tube free and on a purée/thickened liquid diet. So far she has done great with this diet and does not seem to mind at all that mommy now has to feed her everything again. She is also back to drinking plenty of almond milk, it is just now thickened and coming from a bottle instead of a sippy. I tried to skip the bottle and go straight from breast feeding to a sippy cup but I was okay with the bottle if it meant we could be NG tube free! Being the independent miss she is, she will only drink for something she can hold onto by herself, and now that she can only use her left had a bottle is skinnier and easier to manage with just one hand! Her first days home have wonderful, she’s eating, drinking and has slept through the night! Her napping schedule has been a little harder to regulate, but she calls the shots there and we let her nap when she chooses. Spoiled I think 😋. We even took her down to Josh’s families camp site and she enjoyed the sun and fresh air Saturday! It was a fun weekend, and maybe ended up being a little to much for her. The sun and extra stimulation made for one tired Colbey Raye by Saturday night, she slept all the way home and did not wake up when we put her to bed once home. Sunday was another eventful day, and Colbey Raye rolled over all by herself! She got her arm stuck under her but after a little help she found a comfortable way to stay on her belly, until she rolled right back onto her back! A little later she started moving her right arm up and down purposefully, using the bicep muscle. This is a huge improvement! She also has began to kick out her right leg and will even bear some weight on it if I make her stand. She wiggles her toes and ankle but still has not moved her fingers much at all. She had her first OT appointment on Monday and it went really well. Colbey Raye participated with some whines and cries but over all did very well. Her OT was impressed with her awareness on the right side even with the visual field cut and weakness and was happy to see Colbey Raye is still determined to refigure everything out. PT and speech start next week! Impatient rehab is still an option, this will be discussed when we return to Children’s next week for a follow up in that department. This morning Colbey Raye sat all by herself for a good 20 seconds!! She looses her balance quite easily due to the weakness on the right side, but she’s trying so hard to strengthen it. The transition to coming home this time around has been so much easier on us and on Colbey. The extra time in the hospital was well worth it. Her determination amazes me all the time! She is such a fighter and is so willing to push herself as far as she can to be able to achieve the goals she wants. She’s the sweetest snuggly baby I know, but she is also the most free spirited and independent also. These make for one strong girl and I know time will help her achieve all these goals her little heart is set on.
As for us and Austyn Jayne, being home has been refreshing but a challenge at the same time! Things are harder, and things are much more time consuming, but we are all so happy to be home I wouldn’t change any of it! Austyn Jayne is better day by day and I know she is beyond happy we are home and with her, but she has been a little emotional, and challenging. It has to be extremely hard on a 2 year old to go 2 weeks away form home without her parents, but she did wonderful and is slowly getting back to her “big girl” self 😊. She is still as sweet as can be to Colbey Raye! Whenever Colbey Raye is tired Austyn Jayne covers Colbey up with her blanket, and Austyn Jayne is not one to share her blankets! She wants to play with Colbey Raye so badly but still has not grasped the fact that Colbey Raye can no longer just sit and play, or crawl around with her. Austyn Jayne told me she was going to teach Colbey Raye to crawl again, and got down and all fours and started crawling around the yard, stood up and said “see Co Rayzee, that’s how you do it!” I love her to prices! Even though she can drive me a little crazy 😊. It’s been an adjustment making all of Colbey Rayes food, I’ve gotten better and prepping everything before she lets me know she is hungry! I can tell she gets a little frustrated being moved from seat to seat, lap to lap, and can’t just crawl off and play as she used to. But we are all adjusting, and we are so glad to be home. Next week is when the crazy, busy, routines, all set in. We will be doing PT, OT and speech up to 2 time each per week, and we have follow ups, fundraisers and summer hitting all at the same time! Colbey Raye is going to be tired from all the work, as will this momma! But it is all worth it, and will bless our girl so much!
Colbey Raye had a routine follow up visit with her neurologist today. It went very well, and Her neurologist is impressed with how well Colbey Raye looks and how happy she is. She wants us to have her eyes checked as her right pupil is still quite often more dilated than the left. Both constrict when light hits them so She is not extremely concerned at this point, but still thinks it’s worth having it looked into. We found out today that Colbey’s neurologists fellowship is ending at Seattle children’s and will no longer be following Colbey Raye’s case, we are sad to see her go as she has done a lovely job helping to treat Colbey Raye, but I am beyond excited because Colbey Raye’s “new” doctor is the one doctor I have been wanting to switch to for a while now! I’m so happy to have him overseeing Colbey Raye’s case and could not be happier than I am with this transition! We will start seeing him at our next routine follow up.
This time in our life has been one crazy roller coaster of emotions, and a struggle to find the time, energy and finances to maintain all that one needs to maintain since Colbey Raye’s diagnosis. I am so thankful to all those how have prayed and helped us this far and will continue to be thankful for the future help and support we receive. I am not one to ask for help, it is not in my nature, but in this time in our life I feel it is important for me to do so. I am going to attach a link to a Go Fund Me account that my sister-in-law set up for Colbey Raye, and ask that you help and share our story. This is a difficult time, and medical bills, therapies and medications, time away from work and frequent long drives to Seattle take a toll on our family not just emotionally and physically but also financially. If you are able to help, either by sharing or contributing we are beyond grateful! Our sincerest thank you to all!