Collin has been doing well since coming home two weeks ago. He's off the TPN, and the Broviac has been removed from his chest. His mediport will be inserted December 6. He is tolerating his tube feeds at 45 mL per hour without difficulty, so now I can just run them over night while he sleeps and he doesn't need to be connected to the feeding pump during the day. He is eating and drinking more, and while I'm not sure that he's eating enough to sustain him without the tube feeding, he's headed in the right direction. So far I have kept him on the nectar-thick liquids since he does so well with them, but he is now handling all food textures well again as long as the bites are small. He is crawling all around, pulls himself up to stand, and now bends his knees to sit back down (instead of dropping back onto his rear end). He has not vomited in a while, and the diarrhea finally seems to be improving. On Friday he had his first tub bath in seven months. At first he was terrified, but I held on to him until he was comfortable, and by the end of the bath he was having fun splashing the water the way he used to. He is growing eyelashes, and they are starting to darken. His eyebrows and hair are also starting to grow in, but so far they seem to be coming in white. I have been told his hair may come back a different color or texture, at least at first, and I can't imagine seeing him with hair that is a different color than what it used to be. The corneal abrasion on his right eye seems to be healing nicely, and he is getting used to having his left eye patched again. He has had a slight runny nose over the last few days, but thankfully has not had any fever.
Our schedule is now filling up with appointments for outpatient occupational, pysical, and speech therapy. These appointments, as well as the occasional clinic appointment, are really the only times Collin leaves the house. Since it is the beginning of flu season, we don't want to chance him getting sick. It is very difficult to get him to keep a mask on when we are out, although I can't really blame him! He will also receive therapy services at home through Early Intervention soon. I think he will make good progress, especially now that he won't have hospital stays for chemo to hold him up!
Let me know when, and if, you want me to keep you company during a future MRI!
ReplyDeleteJenn, your little guy is so adorable. I love the "to do list" shirt. What a little fighter. I will certainly continue to follow your blog.
ReplyDeleteThank you for the sweet words about Jazmine. We are forever grateful for those 7 West angels here on earth. My brother Jed was diagnosed at age 4 and in treatment for over eight years. I met Jazmine after Jed passed away in January 2010 and now I am comforted knowing that they are both healthy, happy and dancing together in heaven. We would not have had those eight amazing years with my brother if it was not for Four Diamonds, THON and the 7 West staff.
I hope you will be able to come to THON! I am a sophomore at Penn State and last year I had the privilege of dancing in memory of my brother and I am in the dancer lottery to dance independently in THON 2011 in memory of Jed & Jazmine and in honor of all the other children like your Collin. I find out the first week of February if I have been chosen to dance.
My thoughts and prayers are with you and your family as you continue your journey.
Jenn- my thoughts and prayers are with you and your family. I'm sure Collin, as well as everyone else is happy to have him home! I am a Universal Chair with Penn State Altoona THON and hope you are able to come to THON in February. Welcome to our family, and hope you had a Happy Thanksgiving!
ReplyDelete-Taylor Golder