Paediatrician Appointment

We went to Kaitlyn's Paediatrician appointment today. Kaitlyn made out just fine. She choked on secretions while in the doctor's office, but otherwise it was a good trip out. She absolutely loves getting out in the van. She sat in her Max EasyS while in the van today. It's the first time that we haven't laid her down with her E-Z On vest. Not only did she travel well, she loved being up so high to see out the windows. She made all kinds of happy noises, wouldn't be quiet, and wouldn't stop laughing....so she got the hiccups! She is such a funny good natured kid, full of spunk and life!

She was 11.8 kgs (26 lbs) and (86 cm) 34 inches long. She's a tall chunky monkey. She hasn't gained a lot of weight over the past few months. I think she is starting to level out a bit. She looks really healthy though.

Her cold....well she still has it, but the last two days haven't been too bad. She is mostly just got extra junk in her nose and throat in the morning. As the day goes on she is not too bad, and then gets a little worse around bedtime. Since she isn't running a fever, her sats are fine, and she doesn't even really look sick, we will not start an antibiotic at this time. I've had a bit of post nasal drip myself, with only a slightly sore throat, so I think that this is all just a mild cold running through the house. We decided to go ahead and give Kaitlyn her flu shot today. So far tonight her heart rate is really good, better than it's been, and sats are normal. She probably just needed to get out of the house.

Kaitlyn needs to go for blood work in the next little while. We are going to have her B12 and folate levels checked. She has larger than normal red blood cells, but no anemia (thank goodness). The rest of her blood work we had done the last time looks good.

Dr. Bach is giving a seminar here in Halifax tomorrow at 8:00am, and we were invited to go very last minute. (Late this afternoon in fact). Unfortunately we will be unable to go. We have nobody to take care of our boys, Tim has to work (meetings that he cannot cancel), and there is nobody else that can take care of Kaitlyn. I would take her with me, but the seminar is not specifically SMA related, and I wouldn't want anyone to be annoyed at me for suctioning every few minutes the entire seminar. But what I wouldn't give to meet the man responsible for my daughter living as long as she has. I say him specifically as it was his protocol and research that we found first in our efforts to find ways to improve the quality of our daughter's life.

Confused

Now I'm confused. Last night was just awful. I was up with Kaitlyn four times coughing her, and Tim was up with her twice for suctioning. She was really wet and we were getting out some pretty thick junk from her nose. We have an appointment for the pediatrician tomorrow so we will decide then whether or not to start an antibiotic. I am also dreading what kind of a night we will have tonight. I can go one or two nights on next to no sleep, but anything more and I start to "malfunction". Especially since I have not only Kaitlyn full-time but my two boys as well. We only have a nurse for two hours twice a week for a total of four hours! Not nearly enough. Thankfully this cold or sinus thing(whatever it is) has not affected her sats, although last night and today I have seen her sit at 98% and even dip to 97% for a bit. While these numbers are excellent they are not normal for Kaitlyn.

My girl and me yesterday. She was a little cranky today having missed all that sleep last night.

Better Day

Well we had a better day today. It started out a little rough. We finished our first round of coughs and I was getting ready to lift Kaitlyn out of her crib when she started coughing. She couldn't get her breath the coughing was so intense. I suctioned her really well and then grabbed the cough-assist I got three coughs and a mouthful of yuck, suctioned and got a couple more coughs. When I got her mouth clear and she could breathe again I suctioned her nose and got tons of stuff! It just kept rolling out of her poor nose. When I couldn't get anymore out through her nose I coughed her again and didn't get much so we started our day as normal. The funny thing through this whole cold is that her sats have been fantastic 98-100% all the time. She had one or two little coughs through the day, but nothing serious. It didn't seem like I was suctioning as much today. Hopefully we have seen the worst of this cold and thankfully it has been really mild! The boys are both fine. They still have a bit of a dry cough, and Alexander's nose is still a little wet but I don't think I wiped it as much today.

Lots of Suctioning

Kaitlyn is still sick. She and Alexander are hit the hardest this time. Still no fevers and her sats are normal 99-100%, but her heart rate is still up 20-30 bpm. Owen was a little worse today, but they all still just have runny noses. Alexander started with a bit of a cough today, and is coughing a bit tonight since going to bed. I am really hoping that this cold stays in the head. The last chest cold put Kaitlyn in the hospital for two weeks. I really would rather not have a repeat of that, she narrowly missed intubation. I am on the fence with the antibiotic, she just finished a full round of Cipro. for her aspiration. It takes a lot out of her being on antibiotics, and she has been on them so often over the past few months. So far her secretions are thicker than normal and I am having to suction her every few minutes all day long. She is better at night on bi-pap. But what I am suctioning isn't colored, I'm inclined to wait another day or two and decide if she isn't getting any better.

We hope that Lizzy's Nina can soon get some sleep. Waking to alarms all night is no fun. I hope you can figure out how to help Lizzy get used to this new circuit(new mask and new Pap...no fun)! We are also hoping that Jacob's MaMa is feeling better tomorrow. Having the flu sucks!

My girl's happy as long as she has "Dora Dora....uh oh!" (I swear that's all she knows how to say!)

Another Cold

Well, we are dealing with another cold. I really hope this doesn't become a monthly occurrence. Kaitlyn woke up this morning with increased secretions which have gotten much worse throughout the day. She went to bed at 8:00pm with a fight. The only time she ever fights bed is when she is feeling poorly. She usually wants somebody to stay with her, preferably on a shoulder. I guess it's where she feels the safest. I've already been down to get her up once and hold her on my shoulder. It's the only way I could get her to calm down. She is really wet tonight. I guess there won't be any sleep for us tonight, as Kaitlyn sleeps in our room.

So far she is afebrile and there is nothing in her chest. She sounds really clear. I hope that it stays in her head like the last time. The boys aren't too bad, Owen is a little whiny and quick to cry(which usually means he's not feeling 100%) and Alexander's nose is running and he is still breathing through his mouth. This is awful cause he can't suck his thumb very well. He's pretty fussy too, poor little guy. Hopefully we'll have a relatively quiet night so that they can all get some much needed rest.

Sigh!

Sigh! Kaitlyn started this afternoon with thicker increased secretions. She was awake quite a bit through the night last night. I didn't think much of it last night, as it is fairly common for her to have a bad night now and then. Now I'm wondering if she wasn't feeling a little off. Alexander went to bed quite snotty, and Owen was just a little warm and whiny. Well, we'll see what the morning brings. Kaitlyn's sats and heart rate were excellent going to bed, so perhaps it won't develop into much.

Mouth Breathers!

Both my boys seem to have a little bug. Owen has been sneezing up a storm the past two days. He has had a dry cough also. Now today Alexander has had a stuffy nose, and he is breathing through his mouth. Poor little guy! He's a thumb sucker....he has to pause every few seconds for air. They seem fine other than these minor symptoms, but boy do I cringe everytime one of them sneezes. I can't help but think, oh boy...here we go again! Hopefully this won't develop into anything much, and will bypass Kaitlyn.