Ayla had her 2nd birthday last thursday the 18th:) She had a party on the weekend and dispite her scowl almost the whole time, she had fun:) We made her a really cool princess cake, she loves Cinderella. For her party we had friends bring gifts to donate to the hospital peadiatric inpatient secret closet. It's a big closet they have full of toys and when a kids having a rough day, tests, or just siblings there for a visit, they get to pick something. They were more than generous during our stay with both Ezra and Ayla, so we wanted to give something back. We got to drop them off yesterday and they were very grateful:)
The reason we dropped them off yesterday was because we took Ayla in to see our Ped. She keeps picking up germs and since she's immune compromised it's such a pain. She has had a cough on and off, mostly at night. But it can keep her (and us) awake. We wanted to see what steps we should follow should she ever pick up something more than a cold. They confirmed what we thought, DO NOT take her to a walk in clinic. We are to call our ped or fam and get her in ASAP, just explain to the sercretary the circumstances. She is fine, cough with post nasal drip. We were hesitantly giving her a cough supressent to take the edge off for her at night. They sent us home with a script for Venolin and an air chamber to use as needed to help loosen up any gunk now or later use. Praise God, they gave us the air chamber in the hospital ($60-$70 to buy) :)
Today she had physio. It went pretty terribly yet again. I so was hoping for another good week, but now they are pushing her. They are sure she doesn't feel pain, it's all emotional. They are no tears just cries and screams the whole time. It's so hard to watch her and try to keep encouraging her. The PT today told us, "she has to do this and she can do it." I know she can and i know she will but it's so hard that she doesn't want to...she just fights it all the way. They got her some leg braces today. They just hold her knees straight so that she can stand. She bared all of her weight today with the braces on. So it's just getting her to do that every day to build up those muscles, "MAKE IT FUN" is what they say....riiiiiiight. So God willing we can figure out a way to make it fun. She will have occupational therapy on friday, we are doing 2 days a week now. PT said her goal was to have her standing for a few seconds on her own by march 12 for her next Rheumatology appt.
It pains me because she must have some want and desire to be able to walk and run and play again. It was so hard at her birthday for her to watch all the other kids going up and down the stairs running and playing...and there she sits, watching. It makes me so sad.
2 steps forward, 1 back i guess.
Thank goodness for the Lord...
I heard something last week at a ladies mornign at church, "there are 2 times to pray: when you feel like it and when you don't." I just thought...wow that sums it up doesn't it....??
That's all for now!
God Bless!
Lacy
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment