Bloodwork and Slings

We've had a few quiet days around here. Kaitlyn has been enjoying some play with slings. We have never set Kaitlyn up in slings before. She really seems to love it. She has always had some movement in her arms, and minimal movement in her legs, but she is enjoying the freedom of movement that the slings offer. She can really kick those legs now, she sort of looks like a little frog laying on its back. She is tickled when she can swing her legs far enough to "click" her heels together.

We have finished our round of antibiotics from her aspiration. She seems not to have suffered any set backs from this whole episode, for which we are very thankful. We got a call from our pediatrician at the beginning of the week. She says that Kaitlyn's recent blood work shows larger than normal red blood cells. I find this a little worrisome, as this has happened before, and in August when she had to go for emergency surgery she needed a transfusion of blood and platelets. I didn't really question this too much at the time I guess we were just so concerned about pulling through the surgery and getting her home and figuring out a whole new way of feeding our daughter.....etc., etc. Now when I look back I should have questioned why her platelets and blood were low. She had been really healthy before her J-tube blocked.

We have an appointment with our pediatrician in another week, so I guess we'll discuss a plan of action at that time.

Alexander has been really funny lately. He wants to be just like big brother. The other day Owen come home with a necklace he had made at nursery school. Alexander wanted one too, so I made him a necklace with some old buttons, and he was so proud to be just like brother.



Not sure what's on Alexander's face....we're going through a dipping faze.

Wheelchair Trial

Kaitlyn had her wheel chair trial today. She tolerated sitting up very well. We are trialing a wheelchair through our local children's hospital. You can tell that they haven't dealt with children like Kaitlyn before. It is soooo frustrating. The wheelchair rep. doesn't carry demo chairs and pieces. He has a base for us to trial, but the seating and joystick are posing a problem. The joystick especially is not working out. They keep trying to mount the joystick in the center but they don't even have an arm to put it on. They say when they find something that she can use then they will know what to order, and request for funding.

This makes me a little upset because I don't see how Kaitlyn can even learn how to drive without the proper set-up. She is very interested in grabbing the joystick and spinning the chair in circles. She thinks that it is funny when the chair moves, but she cannot make the chair go in all directions because she can't move her hand in the required positions. I have shown them some things that have worked for other SMA children, but they are more interested in trying to make what they have work.

Kaitlyn enjoyed the afternoon out of the house. She loves going in the van, and often asks "Go..car-car". Here's a pic of her on the way home today watching, what else, Dora!

Update

Kaitlyn has been doing well the last two days. Her secretions are increased and thicker than normal. My biggest concern is her pseudomonas. We have been watching her extra close, and are doing extra treatments. Tomorrow I will try to get in touch with our pediatrician. We have started an antibiotic just to be safe. Her fever only ever spiked that once and after one dose of tylenol never came back. I think that we were lucky and managed to get out what she aspirated. It is very unlikely that she aspirated anything more than her own secretions. There was no indication that she aspirated formula.

We are supposed to go for a wheelchair trial again tomorrow. It's the first one in a month! I think we'll go unless there are any major changes in Kaitlyn. So far she hasn't needed any extra time on bi-pap, her sats are fantastic (98-100%) just the increase in secretions. She may not tolerate any length of time sitting up tomorrow, but if she can just tolerate it long enough to check the adaptations they were supposed to have made then it will be a productive appointment. This chair would only be a loaner, but it will let her figure it out enough to get funding for a chair of her own. We are very anxious to get Kaitlyn moving.

Aspiration

Kaitlyn aspirated something very early this morning. Tim woke up when he heard Kaitlyn struggling with secretions. When he went over to her he said that she had a mouthful. She aspirated some of the secretions and her sats began dropping really fast. She only went down into the low 80's, but it was still pretty scary. It took several rounds of coughing to keep her sats from dropping further than mid-80's. I finally fumbled the O2 tank on, and we bled O2 through the cough-assist for a few more coughs. This really does the trick when she is dropping fast. She finally came back up to high 80's low 90's, but needed a little rest from coughing so much. Tim placed her in postural drainage and put her back on her bi-pap. She was satting 93-94 at this time. I started some chest percussions to help move secretions. With a few minutes rest and lots of suctioning, I coughed Kaitlyn again. She seemed a little better, satting 94-95 off bi-pap.

I put her back on bi-pap to sleep the rest of the night. I checked her temp. before crawling back to bed myself and it was 36.8 which is perfect for Kaitlyn. When she got up this morning she was satting 98 on bi-pap. She did really well through her first set of coughs, chest physio, and more coughs. I got her out of her crib, washed and dressed the same as always. She is maintaining sats of about 95% off bi-pap. Her heart rate is elevated and her temp. was up to 39.2 by 9:30am. We tried to call our pediatrician, but she didn't answer the page, so we got the on-call pediatrician at our local hospital. She has called in an antibiotic for Kaitlyn, so we will start that as soon as it's available.

Couch Play

The kids were playing on the couch tonight. I just thought that I would share the pics. Kaitlyn loves sitting up on the couch like a big girl. Owen was trying to play cars with her, but as you can see she was more interested in her precious piece of plastic! She has taken a shine lately to plastic from O2 probes, syringe wrappers, and such. She can't get it into her mouth, so we let her crinkle it in her fingers. I guess she's in love with the sounds it makes! Take her plastic away and she crys, so she wins! She even takes it to bed with her!

Crazy Hair

Kaitlyn has been doing pretty well the last few days. We have had short spells of sitting up...yay! I was reading the other day that symptoms of hayfever can happen while using Enoxaparin. Kaitlyn has been receiving enoxaparin injections for the past month for blood clots in the groin of both legs. I hope that she can adjust to the increase in secretions.

She was having an absolute BLAST tonight chasing brothers with Daddy. Tim carried her and hollered at the boys and everybody was running up and down the halls. Lots of noise, bouncing and smiles. Tim noticed how long Kaitlyn's hair is getting. I can't believe how fast the children grow! Our oldest boy, Owen, will be 4 years old November 14th and the Twins will be 2 years old November 30th.

Better

Kaitlyn is almost better now. She still has increased secretions, which we are still trying to figure out the cause. It seems like she should be getting better from her cold, but the extra secretions could also be her teeth. She hasn't had any choking spells the last couple of days. We have been able to carry her around on our shoulders again, and she tolerated her bath tonight without suctioning. We have also been able to hold her again, this is huge for Kaitlyn because she LOVES to be held.

Daddy indulged her Dora fetish over the weekend, he actually let her have Dora DVD while doing her morning breathing treatment.





They don't look much like twins, but sometimes it's priceless how much these two have similar facial expressions and interests.