Aug 31, 2008

She's Plugging Herself.

See, I can find the hole all by myself.

AND I can make sound IF I want to.

Ainsley has discovered that when she plugs up her trach she can make sound. It's been happening over the last week and now she's able to find the little hole that is the perfect size for her little finger. I hope it won't get stuck.

A Busy August

I can't believe it is the last day of August. I didn't get around to doing a single post to the blog. Good grief! There was a lot going on, though.

Therapy and Development
Ainsley met with Gay, a very experienced PT at the birth-to-three clinic. She was pleased with the progress Ainsley has made since she'd seen her a few months before. She brought a stander but it was big and bulky and Ainsley hated it. We've had pretty good progress getting Ainsley to stand against the couch, supporting herself with her upper body. Massage of her right leg helps her be able to straighten it better. That leg still appears about an inch longer than the other but we are really hoping that is muscular and will resolve itself.

She has managed to pull herself around the house a few feet at a time but I wouldn't consider it to be a crawl yet.

But look how pleased with herself she is. Ahhh.

Ainsley had her well-child checkup at the beginning of the month. Her doctor thinks she's doing great. She's happy that she's made progress. She did however say that she think Ainsley is developmentally at about 9 months of age. Which is hard to hear since it's less than half her actual age, but I think it's pretty accurate. The new nurse keeps saying how smart Ainsley is and all her therapists have been impressed with how quickly she seems to learn things. But in reality she seems about like a 9 month old in her receptive language skills, motor skills, and basic understanding of what's going on. She's not eating or speaking so in those areas she's even further behind. We have an appointment with a genetic neurologist in September who may be able to give us a developmental prognosis. He saw her in the hospital when she was less than 2 months old. My hope is that now that she's doing more than just lying in the crib he will be better able to evaluate her.

Both Evie and Adrian had their well-child checkups (a bit late) and got an A+. Thank God for two healthy children. Well three, I suppose, depending on how you look at it.

We had a follow-up appointment with orthopedics. They did an x-ray which showed the thigh bones are still in the hip sockets although her hip sockets still appear to be somewhat shallow. They are unable to tell if the right leg is in fact longer or if the apparent leg length discrepancy is due to tightening of her muscles. They will keep an eye on her. Her surgeon wants to see her personally himself in October and that appointment is scheduled. They do not recommend orthotic shoes or anything like that at this point. And made a point of telling us that leg length discrepancies often do not matter. If she's going to walk, she will walk regardless of any difference. We have a family member that walks just fine despite a difference of 3/4" so that is reassuring. Ainsley of course is at further risk for walking difficulty due to the hip dysplasia and her cerebellum. We can only wait and see.

Standing with Elvira for the ortho appt. , but reluctantly.

Our new nurse, Elvira, started on the 4th. She will be coming Mondays and Wednesdays. Even though we received approval from the state for 10 hours per day of in home nursing 7 days a week we think 2-3 days a week would be perfect. (We're hoping our old nurse will get signed on and come once a week on Fridays or Saturdays either every week or every-other week depending on what she wants.) Having the additional help has been great. She's very warm and loves the kids. Best of all, she is competent and I trust her to take good care of Ainsley. She's been bringing us kale, chard, strawberries and yellow zucchini from her husband's pea patch. She's even been bringing chocolates for the kids. They love her. It's like having a surrogate grandma around the house to dote on them. Ainsley is warming up. She cried some the first few times I left the house but did better the last time. She even offers to help with housework. I can't believe how fortunate we are to have found her. (I hope nothing goes wrong.) I've even been able to get out school clothes shopping since both the kids have grown and needed long pants, shoes and long sleeved shirts.

We had our big family vacation in mid-August. We went camping and up to Mt. Rainier, and did some fun day trips: a ferry ride to Bainbridge Island and a day at the beach, a day at Wild Waves on the hottest day of the year, a day a Remlinger Farms to go on the rides, got vegetables for the week and picked blackberries to make blackberry pie the following week. It was a crazy week packed with busyness. I'll try to post details of the week and photos soon. Our computer is overtaxed with photos. We've been shopping for a new computer to handle the job but settled on buying RAM instead. It's been ordered and when we get that installed I might actually be able to manage our photos.

Deaths in the Family
Sadly there were a number of deaths in the month of August. Both Joanne and Tom's mothers passed away. It's always sad to say goodbye even when a loved one has a long and good life. There were two deaths in our trach forum community which is almost like a family. The death of a baby always seems so unfair. Tragically, Tommy, who was Ainsley's age, was doing so well earlier in the month. He had been decannulated and was off oxygen in preparation to schedule his heart surgery. Video of his decannulation felt like such a triumph. We were all thrilled that things were going so well. Then he started having respiratory distress and they had to put the trach back in. I'm not sure exactly what happened but I think it was all too much and his heart and lungs were too sick and there was nothing they could do to help him and he passed on. My thoughts have been with his family. I cannot imagine how difficult it would be to have your hopes so high and then have it all taken away.

Pulmonology Review and Surgery
We had our long awaited appointment with Dr. Debley the pulmonologist that Dr. Hing consulted with after our Cincinnati appointment. We liked him very much. I always feel a little sorry for a new doctor having to review a 6" stack of medical records with an incredibly complex medical history to come up with a diagnosis and treatment plan within the appointment slot. Sorry for us too, since we were there for 2 hours. They sent in a resident to go over all the history first so he could review it prior to Dr. Debley coming in. Poor guy. When Dr. Debley finally did come in they said they agreed that Ainsley does have bronchiectasis and they are concerned that it could get worse and her health could decline. It's unusual in that she sats high, has thin secretions, few infections, she's on no special meds and has no repiratory issues such as asthma. The one thing that she has is excessive secretions. Maybe finally someone is hearing us on that one. They went through each of the possible causes of bronchiectasis:
1)congentital-ususally is more isolated within the lungs, not as diffuse as Ainsley
2)cystic fibrosis- usually presents with thick secretions but we're getting a sweat test next week to rule it out
3)frequent respiratory infections/pneumonias- she's had some colds but has only ever been hospitalized for illness, once for RSV, and has never had pneumonia so this doesn't seen too likely
4)aspiration of food-she's at risk because of her dysphagia but the swelling is blocking the airway. We've never seen any food in her trach secretions even doing dye tests where any spillage is obvious because of the extreme color.
5)aspiration of stomach content- we know she refluxes her stomach content especially when coughing up secretions and has had a serious vomiting problem, whether it has made it into the lungs we cannot be sure
However, this last possibility is looking pretty suspicious. The airway swelling could be a response to contact with stomach content. The only way to stop the potential aspiration of stomach content is to do a Nissen fundoplication surgery where they wrap part of the stomach around the lower esophagus to prevent vomiting. We have long been considering this but have been reluctant due to potential side effects such a s dumping syndrome, low blood sugar, frequent BM's, difficulty swallowing food and retching. Plus we'd hoped she'd outgrow it but it's looking like that is unlikley to happen. Dr. Debley thinks she should have the surgery to protect her lungs from any potential further damage. We have a consultation with a surgeon on October 1st who was recommended by several people. Dr. Debley would like to see the surgery done in October if possible, before the height of cold and flu season at the hospital. In a way it's a relief to have the decision out of our hands. It would be so wonderful not to have to constantly worry that everywhere we go she'll throw up at any moment, which she actually did during the appointment(that probably helped to have a him see it). If it goes well and there are no side effects it could be life changing for us. I thought we would make it through a year without a surgery but it's looking like that isn't going to happen. This will make surgery number 6 in two years. Poor girl.

Moving Into A New Season
We're now finishing up August with some construction projects around the house. Trying to get some repairs done before the bad weather sets in. Of course that's a bit of a joke with the weather being the way it was this year, raining practically every few days the whole month. The kids go back to school in a few days and I'm waiting to hear the final word about Ainsley's placement in a birth-to-three preschool program that should start in the next few weeks. If that happens as expected it will replace her in-home therapy visits and will be a whole new experience for her. I'm looking forward to meeting other moms of kids with special needs and suspect this will be the beginning of a whole new chapter in our lives with the two oldest now going to school and the acceptance that even our baby is growing up and moving on to new things. I love the fall for all the possibility it brings.