Our munchkin is turning into a bit of a character. It's amazing how babies know exactly what they do and don't want. Ashling is so stubborn. She is very keen to put her thumb in her mouth in conjunction with whichever toy she's playing with. They have to go in at exactly the same time! This can be very tricky, as you can imagine. But as soon as we try to help her, she gets all grizzly and tries again herself, ending up highly frustrated if she can't achieve it.
She's also doing the whole thing of being perfectly happy in her cot until she hears me quietly sneaking into her room for something. Then suddenly it's "Waaaaaaahhhh" as if she's miserable. Kids! They start the messin very early. She's a thundering rogue already and has both of us wrapped round her little finger.
Nothing much has changed, although she's much more alert and active with her hands and legs. The Orthopedic surgeon is going to inject botox into her legs the week after next (no there's no free samples for Mammy's forehead!). What this will apparently do is that it will temporarily immobilise her quadricept muscles (front of thigh) and so she will have to use her hamstrings instead (back of thighs). The idea is that the muscles at the back of her legs will get stronger and this will hopefully allow her to extend and straighten her legs properly. Fingers crossed that it will work!
One of our main concerns at the moment is that her weight is quite poor, she is tiny -about 14 lbs. We've been trying everything to fatten her up but she's not gaining much, mainly due to the fact that she wont take much solids and she still throws her milk up from time to time. This is frustrating the life out of me to be honest cause she's doing so well in other ways, but I'd love to see her a bit more robust! We've just started giving her a supplement which will hopefully help to fatten her up so fingers crossed on that count too.
Otherwise, she's still on oxygen and she still has a feeding tube. We're hoping to try taking her feeding tube out for a while to see if she would take more without the tube down the back of her throat! (wouldn't you!). The idea is to take it out and hope that she'll get hungry enough to feed properly (over time) But she will ultimately lose weight in the process so we're waiting till she has a bit more reserve.
Well that's it for now. She's 8 months today!!! Can't believe it.
Hi Ger, Caroline & Ashling
ReplyDeleteThanks so much for keeping us updated on Ashlings progress... and good to hear that shes learning whos the boss!! They really do rule the roost from a very early age alright!
We will continue to keep Ashling in our thoughts & prayers and hope she will gain a few pounds (if only it was as easy for her as it is for us!!). And hope the botox works too...
The pictures are great and the 3 of you look fantastic.
Take care
El, Pat & boys xxx
Hi Ger, Car & Ashling, Great to hear that there is improvement she is looking really well & hopefully the botox will help Ashlings legs. I hope she starts to bulk up soon I wish I could send yee over some of mine:-).
ReplyDeleteGod bless yee all and Ill chat to yee soon.
Mick
P.S. Ger don't be too upset when yee get beat in the Munster Final.... :-)
Car and Ger,
ReplyDeleteYou are both doing an AMAZING job so keep positive and your beautiful daughter will continue to astound and amaze you....not to mention keep you on your toes!
Love Siobhan, Katie and Paul xxx
Interesting stuff about the Botox. I sent an email to Reece's orthopaedic surgeon telling him about it. As far as the weight thing goes, I know exactly where you are coming from. I obsess about it! Reece is only 11 lbs at 5 1/2 months, and he only measures 22 inches. So, he is also tiny. His pediatrician keeps saying that he is doing great though, so I try not to stress too much about it! Let me know how the Botox procedure goes! Take care!
ReplyDeleteBeth Barham
Hello,
ReplyDeleteI have been searching the web to find others with Escobar syndrome. I do private duty nursing for an eight year old little girl that has Escobar's, and I was suprised at the similiarities between Ashling and Brianna. Brianna's mom also reported not a lot of movement when pregnant, and she had polyhydramnios, (extra amniotic fluid). Brianna was born with some ribs fused and a diaphragmatic hernia, (hole in the diaphragm and everything was pushing up into the space where the lung was supposed to be). She has the usual webbing and joint contractures that you usually see with this syndrome. But I guess why I am writing is to tell you that Brianna is a smart beautiful little girl. She is homeschooled because she is on a respirator,(because her lungs were so compromised). She runs, jumps, laughs and plays like any other 8 year old. She does have surgeries every 6 months because she has titanium rib devices to help correct her fused ribs, and she is definitely a short little thing, but that does not stop her.
I will remember Ashling in my prayers and I wish you well!
Carol V.
A RN in Texas, USA
rncarol94@att.net
hi Caroline and Ger
ReplyDeleteCaroline, Its Sonja here (ex LI!). Its great to see what a beautiful girl you have, I am sorry its been such a hard road for you both and for Ashling too, I hope she will gain lots of weight soon!
Tim and I are living in Wellington, we love it here though we miss friends and family, havent really made any friends in the 6 months we've been here. how sad is that?! But its ok actaully cause Im just really busy at uni, and also Im pregnant!! so very exciting, its due in december so we are about half way. Sure gonna be a huge life change but we'll never be more ready than now.
Anyway, I know you two are great parents and I hope you remember to take a tiny bit of time for yourselves every now and then? Hmmm maybe thats just wishful thinking!!
Love, sonja