I think the last update was over 2 months ago. Since then, we gradually became familiar with our summer plan. Our summer plan consisted of sleeping a little bit more and generally not having to get the kids up early (with a few exceptions). Even Olivia settled into a pattern of sleeping until almost 9 am or at least until 8:30 typically. She saw both her cardiologist and her pulmonary doctor. As far as her heart is concerned, her VSD is getting smaller and the PFO is pretty much a non issue right now. But she has a pulmonary valve stenosis. Right now, it is a good thing because it has been helping keep too much blood from going to her lungs. So, in tandem with the VSD this heart issue is okay with us for now. She has also been taken off all other meds for heart and lung issues. Olivia's lungs are much better and are not real worrisome to anyone at this time. She won't have to see our cardiologist for another year and the Pulmonologist in October sometime.
These two visits back in early July or late June brought us this welcome news along with the customary pat on the back for Adrienne for doing so well with Olivia. It is nice to get encouraging words from the medical community, especially since they can't really help out in any other ways besides signing documents that we can pester the insurance company with.
Sara and I survived the swim team experience this summer (it ended right around her birthday). Andy hung out with us at the home meets for a couple of hours, before getting too hot and having mom come get him. I pretty much had never really gotten fully immersed in the process until this summer. It is WAY easier than the Softball All-Star seasons of the past. Yeah, it is hot and kind of boring, but not nearly as grueling. Sara also played with some girls on an indoor soccer team, which Adrienne and I took turns going to see (Andy also took turns going to games).
Olivia, in the meantime had several doctor visits. She has seen an ENT a few times. The last time, it was determined that she had quite a bit of fluid build up in her ears and also they would get partially clogged with wax. This was a determining factor in whether or not she can actually hear. She then had an ABR test which determined, roughly, since they did not do the full test, which requires sedating her, that her hearing is poor due to the minute structure of her inner ear bones along with the fluid and wax. It is NOT neurological at all. That is a very good thing, because she will be able to hear just fine as she gets older. We still were pondering some sort of hearing aids for her. They are two things: not cheap and not covered by insurance. This means we did not run out and have her fitted.
She also began going to some PT (physical therapy) every other week at a PTC (pediatric therapy center) a few miles north of us on US 59. That is also not cheap and this particular place is also not covered by our insurance. They will cover some place in Pearland. It looks close enough on a map to someone who has never tried to drive across the Houston-Metro area with a baby on a feeding tube with reflux. For that person (Adrienne) it is VERY far away. Especially by herself. So, we are petitioning the insurance company to cover the closer place. Then, she could also get OT (occupational therapy) and eventually Speech Therapy, which could start sooner than we originally thought.
We have learned some good stuff from PT and so has Olivia. She has begun to roll over a little bit and even a modified crawl (with mom holding quite a bit of her weight) We have just mostly to get her out of her chair, which she gets really bored of now very easily and she likes to be held and to sit with someone on the floor playing (she doesn't really sit up unassisted, but she does love to be held and have her tummy time). She is very ticklish and loves to have raspberries blown on her legs and neck. She will do her version of laughing with a sort of hoarse "hoo" sound. She will imitate me if I "hoo" back to her and tickle her.
She has grown a bit since the last 2 months. She weighed 12 lbs a couple of weeks ago. She also has much more hair on her head. So, the CdLS life for us and for her is pretty much just keeping up with feedings and doing plenty of venting and mixing it up with some tummy time and some other holds to help her gain more back strength and upper body strength.
Here is a typical day with our atypical Olivia. (this will change a bit when school starts for Sara and preschool starts for Andy) I am up around 7am to let the dog out for a bit and then take a shower. When I am ready to leave for work around 7:30 I wake Adrienne up, if she is not already awake. She can do her morning routine for herself (dressing, putting contacts in etc) before waking the kids and before Olivia wakes up. She wakes up sometime around 8:30 or so, and will need a diaper change and some cleaning of the Mic-key button (where the feeding tube connects) sight. It is not fully leakproof and gets kind of yucky over time. She will also probably need to be vented to release the gas pressure in her tummy. She also produces copious quantities of mucous which is an ongoing battle when it comes to doing anything with her; gas and mucous, we could hold a clinic on how to remove it and how to recognize the symptoms of it in her behavior. Mom can usually get the other kids breakfast by 9:30 or so, and also clean up the kitchen and make the beds and deal with the other issues that come up with 2 kids in the house who don't always agree on everything. (nice positive spin on fighting) Olivia doesn't usually take any real naps ALL DAY LONG. So, when she crashes for any amount of time, it is a race to do some laundry or some other chore. (Adrienne does this fantastically, by the way) Somehow, the kids get lunch too. Sometime between 11:30 am and 1 pm the kids get lunch. sometimes at lunch, I came home to take them to the library. not very often though. sometimes Grandmamma would come and take them out for a bit too. Usually they would get settled into some TV for the afternoon...Andy gets bored with TV easily (that is a good thing) And then, I would arrive home around 5:00 to 5:30 and great everybody and we have been swimming for about an hour each day before I come inside to make dinner. I try to do this quickly and let mom come down to eat and clean by 7:00 pm or so. Then I get Olivia time. Sometimes she is crashed out, but more frequently, I hang out with her down stairs and check the email (yes, I read all the email, I just don't respond regularly) She will probably need to be vented sometime during this period. Sometimes she has tons of mucous and it is a long and drawn out procedure. This summer we would let the nights get late before bedtime, and I would bath Olivia and mom would bath Andy (Sara of course, takes care of herself) then from sometime between 9:00 and 10:00 it would be bedtime. Olivia typically gets tired and will go to sleep by 10:00 too. Then Adrienne gets to take a shower and we have a chance to talk or watch something on TV.... Adrienne still has to deal with adding formula to the bag 2 times and night and also give her meds at midnight and at 3:00 am. (she has meds at other times throughout the day too) well, that is our day to day schedule...with a few wrinkles here and there of course due to varying attitudes and latitudes... hope all is well out there ... Happy B-day to Elfrieda Schultz (103!!!) and to Dorothy too. Roger, you are in our thoughts daily and I look forward to reading your blog quite often. ... take care, be seeing you, Andrew and family
