More Blah-ness.....

Zoe Still Sick

Zoe is still not quite herself. She continues to run a low-grade fever and sleeps a lot. Her eyes have a hollow-ness to them that I couldn't really describe to the doctor. It's just a look she gets when she is sick. We took her to the doctor on Tuesday because we thought maybe she had a urinary tract infection. But her urine was fine. Which is great. But we still don't have an answer as to what is wrong. The doctor said her lungs sound good- so that was great news. So we are going to give her another couple of weeks and if she is still having fevers, we will take some blood cultures and do a chest x-ray.

For now, we just wait.

And wait.

And watch every little sign that something isn't quite right.

And worry.

We are not the type to worry. But when our gut tells us something is wrong and we aren't sure what, it worries me. This is not typical for Zoe. Typically it is very obvious that she either has a GI bug or a lung infection.

Zoe's Feeding Study

Good news on the feeding study though (and here I try to focus on the positive because I know how lucky we are that Zoe is doing as well as she is). Zoe did not aspirate on any of the food or liquid during the test. They did mention that she "double swallows" liquids and liquidity food. This means she brings the food under her epiglottis before pushing it forward and swallowing it correctly the second time. She also tends to store food in her mouth when she eats (this we already knew since she will sign "more" even when her cheeks are bulging with food!) Neither of these findings is concerning since it is not causing her to choke or aspirate on her food. We were very glad to hear this. Actually "very glad" does not really capture our relief. We were pretty sure she was not aspirating on feeds but worried what it would mean if she was. And so we are pretty freaking thrilled that we don't have to deal with that right now.

The Next Step

So the next step will be an upper GI test where Zoe will have to drink barium while they take xrays to tract where the liquid goes as she swallows and digests it. This may or may not show us the reflux she is having. Sometimes she refluxes well after a meal, not always during or right after. So it may not show up. We have made the decision to hold off on starting reflux meds since her lungs sound good right now. If she continues to get lung infections, we will again consider putting her on meds if we think she is aspirating on her reflux.

Thanks for the Support

Anyway, thanks to all of those who read this blog and keep us in your thoughts. I appreciate that I may type things that not all people want to read at times. But it is important for me to have somewhere where I can express what I am feeling. Gavin and I don't have many friends and our families live far away. And I have a feeling my colleagues want to scream sometimes when I am talking about Zoe, yet again. And so it is nice to be able to type whatever I want and people can read it or leave it as they want.

For now, I am going to pour myself a bowel of cereal (my comfort food). Gavin is working tonight. Zoe was so exhausted from her day at school that she fell asleep at 5:30 without eating any dinner.

Only she knows what her body needs.

And so I will creep into her room and watch her sleep.

Count her breaths.

And try not to focus on the blue hollows circling her beautiful eyes.

Bit of a Blah Day...

Zoe has been running a fever again since Saturday. Just a low grade one. So we are just waiting to see how she does. She did great eating and drinking Saturday but not so great the last two days. And so we are waiting to see how that goes too.

The feeding study is tomorrow and we are feeling a bit anxious about it. Since birth we have gotten pressured to put Zoe on a permanent feeding tube (G-tube). Some of the kids need this. But we have never felt that Zoe did/does. So it feels like this constant argument. We have agreed to the feeding study since she has had so many lung issues and we need to be sure she is not aspirating on her feeds. If anything, we think she is aspirating on reflux and this test won't tell us that anyway. And a g-tube won't stop her from aspirating on reflux. We know at least two 1P36 kids who have g-tubes and still have major lung issues.

Zoe is currently laughing like a maniac (she is supposed to be sleeping). So I am going to go eat my dessert and listen to my daughter laugh. She was determined to tell me something during dinner and it took us 15 minutes to figure out the exciting news was "Grandad gave me some milk today." She also wanted to swing on the swing outside after dinner with grandad. How could we say no when it took us so long to figure out her request? And so she got her swing in before bed.

Bragging About My Brilliant Daughter

Ready for Preschool

We have not had the official meeting at Zoe's daycare yet to decide if she will move up to the preschool class with her peers but from the conversations I have had with her teachers, I get the impression they think she is ready. They have mentioned that although Zoe is still at a 3-6 month level physically, they have seen such huge gains in her cognitive and social skills since she has started using the walker and stander. This does not surprise me. Initially we thought perhaps preschool in the fall was too ambitious. But since then we have been conducting our own little "tests" to figure out how much really is going on in that head of hers.

Whose Shoes?

Every time we pick up two pair of shoes (one of Zoe's and one of mommy's) we will ask Zoe, "Where is Zoe's shoes?" Zoe will always pick the right pair. So this morning I tried, "Where is mommy's shoes?" And Zoe correctly identified mommy's shoes. I thought perhaps she was just picking which shoes she wanted to wear since we often hold two choices in front of her to pick but it is now obvious that she understands the question and knows the answer.

Body Parts

We tried asking Zoe about different body parts this morning so she could point them out on her doll. Zoe immediately pointed to baby's eye, nose, ear, head, mouth. When I asked about baby's hand, Zoe looked at her hand but did not point at it. A minute later, she did point at the hand. So I think that one question took her a minute to process. Even though she knew the answer and showed it by looking right away, it took her a minute to point.

Pointing Out Pictures in a Book

For a few weeks now we have noticed Zoe will point to pictures in the book that are typically funny (like Yertle the Turtle with mud on his head and don't get her started on how funny the picture of the little boy crying is!) and laugh. It is like she is showing us, "Hey look mom and dad, isn't that hilarious?"

In short- Zoe as always has amazed us even beyond what we would hope for!

On again, Off again...

Zoe in a great mood despite the tube.

Zoe back on tube feedings

It's been a busy week here. After three wonderful weeks of Zoe being well, she came down with another chest infection. She was choking a lot on her mucus and had a fever for six days straight. So after having to do the first step of CPR on her several times in one night, we decided it was time to take her back to the doctor's. The pediatrician prescribed an antibiotic to dry up the mucus. It began working right away but unfortunately zapped Zoe's appetite (which has happened before). We now have an emergency protocol to insert the NG tube at home after 12 hours of Zoe not peeing. And so, Sunday morning, while Gavin was in the middle of his third 12 hour shift in three days at the emergency room, I inserted an NG tube.

Zoe did great with the tube insertion. We have come up with a way of bundling her body and Riann (the respite worker) held her head. It was a rough week with Gavin working lots of hours (we are grateful for the hours/money but this week has been hard since it has been 18 days since the two of us has had a day off at the same time).

Thankfully, Gavin's dad Alan is here right now to help out. Zoe, as always has done amazing and maintained a great energy level throughout this latest illness. She even went to daycare for half of Thursday and all day today. In the past, we kept her out of school when she was on tube feedings. But given how great she was feeling, we didn't think it was fair to keep her home. Tonight we let Zoe take the tube out and hopefully she will eat and drink well this weekend.

Feeding Study Scheduled Tuesday

Zoe has a feeding study scheduled for this Tuesday. Due to her multiple lung infections and extra mucus in her lungs, the doctors want to make sure she is not aspirating on her food.

Zoe helping her grandad pull weeds outside.