Alex was having some respiratory issues last night and struggling to breathe so we made a trip to Children's ER and she was admitted. Jimmy and I have have resorted to taking shifts and he had the long dreaded night (or should I say morning) shift in the ER with Alex while I stayed home to get some sleep.
We don't know what to expect for this stay yet but should know more tonight or tomorrow morning. They've bumped up her oxygen and will continue to monitor her breathing. One of the docs followed up with us on her recent sleep study and seems like it is worse than the first one which is so disappointing to hear. Enough bad news for the day...please pray for rest and strength for our family.
Tuesday, June 30, 2009
Wednesday, June 24, 2009
Telluride recap - and general update
As you can probably tell from the pictures we just posted, things are going well. We haven't been to Children's or had a doctor's appointment in over two weeks! It's weird because I keep checking my planner thinking we are missing something but I haven't gotten a phone call telling us otherwise so I think we are doing alright.
Alex is a great little traveler and festivarian. She loved being in Telluride. We camped at an awesome campground (with a couple 1000 others) and it took us awhile to get up and moving in the mornings and pack for the day. Alex was the first person up in the entire campground each day (before 7am) but we took our time to enjoy the mornings: cooking breakfast, sharing coffee, hanging out with our neighbors, taking walks and listening to people playing music all around us. As soon as Alex would start getting restless in the camper we'd put her chair outside and she'd be good to go until we took off to the festival. We took a 15-20 minute bus ride in and out of town each day and Alex loved this too. She spent a lot of time in her carrier with mommy while in town and hung out in her tent at the festival when the sun was out or it was breezy. It took us about 8 hours to travel to Telluride and another 7 back but Alex was a trooper both ways. She slept over half the time which was nice and didn't protest being in her carseat all day.
We've been meeting once a week with both PT and OT and working on Alex's physical development, eating and motor skills. She has low muscle-tone so we focus a lot on head and trunk control and hope she'll be able to hold her head steady for longer periods of time and eventually sit up on her own. She's definitely getting stronger every day and making us so proud. During tummy time, she pushes herself up for longer and if we put her on her side she can turn over on to her back. She is also interacting with her toys and surroundings more, and one of her favorite things to do is pull out her oxygen cannula and chew on it. We try not to laugh because we don't want to encourage this type of behavior, but it's so funny sometimes watching her be sneaky about it or blow bubbles with it in her mouth.
Alex wears her pink leg braces, also known as Ankle-foot orthoses or AFOs every day to help support her ankles that are turning out. They go up to her knees and don't seem to bother her at all. We have them on about half the day right now and will work up to her wearing them all day this summer.
We are still waiting to hear back on the sleep study and have a lot of appointments at Children's coming up in the new few weeks. It's so good to hear from everyone and we can't tell you how happy we are to read the comments you leave. We send our love and a big hug for all the thoughts and prayers.
Love,
The Diffees
Alex is a great little traveler and festivarian. She loved being in Telluride. We camped at an awesome campground (with a couple 1000 others) and it took us awhile to get up and moving in the mornings and pack for the day. Alex was the first person up in the entire campground each day (before 7am) but we took our time to enjoy the mornings: cooking breakfast, sharing coffee, hanging out with our neighbors, taking walks and listening to people playing music all around us. As soon as Alex would start getting restless in the camper we'd put her chair outside and she'd be good to go until we took off to the festival. We took a 15-20 minute bus ride in and out of town each day and Alex loved this too. She spent a lot of time in her carrier with mommy while in town and hung out in her tent at the festival when the sun was out or it was breezy. It took us about 8 hours to travel to Telluride and another 7 back but Alex was a trooper both ways. She slept over half the time which was nice and didn't protest being in her carseat all day.
We've been meeting once a week with both PT and OT and working on Alex's physical development, eating and motor skills. She has low muscle-tone so we focus a lot on head and trunk control and hope she'll be able to hold her head steady for longer periods of time and eventually sit up on her own. She's definitely getting stronger every day and making us so proud. During tummy time, she pushes herself up for longer and if we put her on her side she can turn over on to her back. She is also interacting with her toys and surroundings more, and one of her favorite things to do is pull out her oxygen cannula and chew on it. We try not to laugh because we don't want to encourage this type of behavior, but it's so funny sometimes watching her be sneaky about it or blow bubbles with it in her mouth.
Alex wears her pink leg braces, also known as Ankle-foot orthoses or AFOs every day to help support her ankles that are turning out. They go up to her knees and don't seem to bother her at all. We have them on about half the day right now and will work up to her wearing them all day this summer.
We are still waiting to hear back on the sleep study and have a lot of appointments at Children's coming up in the new few weeks. It's so good to hear from everyone and we can't tell you how happy we are to read the comments you leave. We send our love and a big hug for all the thoughts and prayers.
Love,
The Diffees
Thursday, June 18, 2009
Hello from Telluride
We're here for our 1st family vacation at the Bluegrass Festival.
All is well with Alex, and we're having a blast so far. The weather is
gorgeous and the mountains are incredible. This is truly God's
country. We're so thankful to be here.
Monday, June 8, 2009
Happy
Alex has been one happy little girl lately. It's been a quick recovery from her last surgery and so far no more problems with the shunt. She's also gotten over her respiratory cold and she's sounding much clearer. She did manage to get another UTI (surprise, surprise) over the weekend so we did have to visit Children's on Sunday morning. Luckily it was a fairly fast trip and once we got her prescription we were on our way home to enjoy the rest of the day. We took Alex to her first City Park Jazz concert yesterday which was really fun and we actually got to hang with a great group of friends. J and I really haven't gotten out much lately and it was nice to spend a relaxing evening outdoors listening to jazz, reminiscing with friends and of course sharing all of this with our baby girl. We thank God for these special times and friends we are blessed to share them with.
We're at the hospital overnight for a sleep study and will be heading home about 6:30 in the morning. I'm not a morning person so I better get some rest while I can. Maybe I can get a fancy head wrap like Alex to sleep with? Good night :)
Wednesday, June 3, 2009
Ready to go home
The sun is out today and all is well with the Diffees. Alex had a pretty good night and is doing well considering she just had surgery 12 hours ago. She is resting up so she can go home. If she manages her pain without needing the heavy stuff, she'll go home later this evening. We couldn't be happier. We know a lot of prayers are being said for our baby girl and our family and we are so grateful :)
Recovering
Surgery went well and Alex is sleeping. Hopefully she'll stay down for the night. Nic and I have gone home and are going to try to get some rest ourselves.
Tuesday, June 2, 2009
Another shunt revision surgery
Can't stay away
We ended up in the ER last night because Alex was having some breathing issues again and most likely has another respiratory bug. We should find out the results of the viral culture later today or tomorrow so we are just making ourselves cozy in our home away from home.
The weekend was up and down. Alex didn't feel well Friday evening and we are not sure what was bothering her but we knew something was off because she vomited earlier that day. We didn't get much sleep that night but she woke up Saturday feeling great and we woke up feeling tired but relieved. Everything was fine until Sunday evening when she started wheezing and sounding congested. She was having difficulty eating and we had to turn her oxygen up so after another sleepless night and seeing her work hard to breathe we made the trip we so often make. Does this sound like Déjà vu or what?
Alex has been her happy self for the most part which makes it easier on J and I. It's so tough to see her go through so much and it breaks our hearts to feel so helpless at times. We know we'll get through this and it won't always be such a roller coaster ride. Until then, please send prayers our way - we need them :)
The weekend was up and down. Alex didn't feel well Friday evening and we are not sure what was bothering her but we knew something was off because she vomited earlier that day. We didn't get much sleep that night but she woke up Saturday feeling great and we woke up feeling tired but relieved. Everything was fine until Sunday evening when she started wheezing and sounding congested. She was having difficulty eating and we had to turn her oxygen up so after another sleepless night and seeing her work hard to breathe we made the trip we so often make. Does this sound like Déjà vu or what?
Alex has been her happy self for the most part which makes it easier on J and I. It's so tough to see her go through so much and it breaks our hearts to feel so helpless at times. We know we'll get through this and it won't always be such a roller coaster ride. Until then, please send prayers our way - we need them :)
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