Tricia's transplant clinic went very well. Everything related to her new lungs is good...she had to reschedule her bronchoscopy when she found out about her surgery, but we're assuming that everything will look good. She had another scan to check on the presumed infection in her chest, and we've been told that it looks "much better", which is a good thing.
Gwyneth is also doing great! She is officially twice her birth length (24in) and more just under 13lbs! Her lungs are doing great!
Nate
That is great news for both and I am excited to hear more and more over this year. Thank God for many miracles.
ReplyDeleteThanks for the update Nate! Praise God for the good news!!
ReplyDeleteI'm anxious to hear what the surprise is since I can't hear the video on my computer.
Thanks for the updates!
ReplyDeletethats great!!
ReplyDeleteSounds great! What age do they say she is at developmentally?
ReplyDeleteI'm officially going to be one of those people who puts their two cents worth without being asked :-) ... how about a Bumbo seat??
ReplyDeleteOT was a great thing for our premie. He is 3 now and we are weaning him off the OT. OT was a blessing helping him gain tone and strength. If you have a birth to 3 program take advantage will will be glad you did.
ReplyDeleteGreat news!! YAY!!
ReplyDeleteYour family has been through sooooo much. When I'm feeling overwhelmed by my own problems, I come over here for hope and inspiration. I can't imagine how you deal with all the stress with such grace. You faith is truly inspiring.
ReplyDeleteI love hearing gwyneth stats. She's doing amazing!
ReplyDeleteThese preemies do things (gain weight, developmental milestones) on their own time. My 25 weeker is turning 2 next week, and he just hit 20 pounds. He's also been receiving PT and OT since he was in the NICU. It's helped a ton and he is just about completely caught up developmentally.
ReplyDeleteGwyneth will get there...SOON!
I'm going to be one of the people who agrees with another poster. ;) Sorry Nate!!
ReplyDeleteI agree wholeheartedly with Megan. A Bumbo seat is great for strengthening the upper torso and encouraging sitting up. My friend has one and used it with her son. He's a small little baby, too. Very slow to grow and wasn't premature. He does so well in that seat. Whatever you choose I'm sure it will be just what Gwyneth needs!
BTW- I'm excited to hear about Tricia's surgery. I think it has something to do with her vocal cords since the only "hint" I could see was the scratchyness to the higher pitched notes.
I hope it all works out well, Tricia!! God Bless!!
Nate, as a mom of a child with special needs....just want to weigh in on the bumbo seat. I would not use it with Gwyneth without an OT/PT checking her out in it. Reason being....she's soooo tiny and if she's not properly supported in it, she will slump (with low trunk tone) and could do more harm than good. It's good for about 60% of the kiddos, I'm told.
ReplyDeleteI'm sure the therapists will give you some good tips! Have they talked to you about early intervention services in your area? Just due to her preemie state alone, she may qualify for Free OT/PT in your home just to help catch her up. The earlier it's brought in, the better outcomes.
Good to hear the good news overall. Can't wait to see birthday pictures!!!!
what great news for both your girls...Praise God!
ReplyDeleteThanks for the news. Such a long way your girls have journeyed from a year ago.
ReplyDeleteKaren et al
Glad to hear the good news about both your beautiful girls!!
ReplyDelete~Jenn
(Central PA)
Tricia! Thanks for the post on my blog. I've been following yours for nearly a year now. Us CF'ers and especially post-tx'ers have to stick together. There aren't that many of us out there and I love to be in contact with others like me!! I think I found your blog originally from Christy's blog. We've been web-friends for about 6ish years now!
ReplyDeleteWonderful news all the way around for both of your girls. Are you guys moved in yet? If not, hoping soon.
ReplyDeleteLaurie
I am so glad there is all good news. i just figured due to her raspy sounding voice while singing that might be the issue for surgery.
ReplyDeleteIt was just so sweet to hear her sing to Gwyneth.
I am so glad they are both doing well.
That's a relief!
Oh yes, if your doctors have not directed you to early intervention, then do it on your own. Our pediatrician never mentioned it and I have no idea why not. Our son got screened and got services (OT and ST mainly) since he was tiny. Starting early is the best thing to do. I started by calling our local Easter Seals and they directed us from there. (I think we got hooked up with someone from our county.) Until he was age three, they provided him with awesome services. At age three the school district takes over and the (free) services are cut back a lot. But we paid for our own at that point.
ReplyDeleteAnyways, make sure you check it out. It amazes me that doctors do not make their patients aware of this.
Glad to here that the girls are doing well. I do have a question for you, from one preemie parent to another... My daughter was born a week before Gwenyth and weighed the same at birth as her. She turned one recently and weighs 13 pounds 1 ounce and is 24.5 inches long. Many of her doctors are concerned about her small stature, but every test given has come back negative. Are doctors concerned about little Gwenyths' size too? I'm beginning to think that they're just meant to be petite, although my husband and I are not. I understand if you can't get back to me, I just though I'd try, seeing as our children are similar in size and age. Thank you and God Bless!
ReplyDeleteWonderful news for both girls! Prayers continuing. Go, Gwyneth, go!
ReplyDeletegreat news about your girls.
ReplyDeleteIs the surgery to do with tricia's vocal chords? I seem to recall you mentioning it ages back something about it. (actually don't answer that I like surprises!!)
Also just realised something funny today. One of the guys I was at uni with has been raising money for CF in Ireland for a while now. He ran the NYC marathon this year, and the fundraising page closed on Gwyneth's first birthday. He and his friends raised more than they ever had done before: €4,750 (not sure what that is in US$).
Their blog can be found at http://stigforcfi.stigonline.com/
Thank you (again) for sharing so much of your story with us. It truly has been and continues to be an inspiration and a humbling experience to read/watch.
Every blessing, Laura Anne from Scotland
That's great News!! Yeah for both your girls!
ReplyDelete