Hannah at 8 months old
I’ve been feeling a bit down since the meeting with the pulmonologist last week. It was not just that incident, but it was the straw that is starting to break my back. Just a reality check upon reality check upon reality check.
Hannah’s disease is progressing.
She has developed ‘acquired nystagmus’ (horizontal involuntary eye shaking) in her left eye. Listed as a symptom of neuronopathic Gaucher disease. It is very unusual that it is just in one eye, but Hannah never does things by the book. What concerns me is that from what I have read about nystagmus, it could also cause vision problems. Until this, Hannah’s vision acuity had always been good. It was her ocular motor apraxia and supranuclear gaze palsy (abnormal eye movements) that were such a problem for her.
Hannah aspirated on chocolate pudding tonight, just a little bit. We had been working on meltable foods for the past few weeks, and she has been loving it. Opening her mouth big and wide for us to put a spoon in, so excited when she gets new tastes like stage 2 fruits and veggies, cotton candy, puff cheetos, ice cream, etc. Tonight, when she was eating pudding, she was laughing and getting really excited eating, taking a huge bite, and she had a big cough soon after. Next thing I see is a tinge of chocolate-covered secretions coming through her trach and HME. I was crushed. It was not a huge amount, and obviously she was able to cough it out because when I suctioned her, there was no more to come out. Lesson to me: Stick with very small bites when feeding by spoon, I guess.
Then, there is Hannah’s developmental delays. She is still in a 9- to 12-month-old’s brain and has been for a year now with so very little change. I am so thankful she does not know any better because she is just happy all the time playing with the same toys she has been playing with for almost a year. Even with therapies, there is so little that we have moved forward on. Hannah’s OT suggested we let her help take her shoes off, and when I heard that, all I could think of was that she does not even try to get to her shoes or even know that they are on.
At dinner tonight, Daddy and Abigail were having dinner together (since Hannah can’t sit at the table just yet, I had to be with her in the other room). Daddy told me that they were talking about something, and Abby made the comment that she was so glad that Hannah didn’t die while she was hospitalized. Daddy asked me later that night if I had ever said anything to Abby, and my answer was “hell no!” We never told Ethan and Abigail how serious Hannah’s hospitalization truly was … we always said that she got “really sick,” but that was the extent of it. So where did Abigail get this idea in her head? Did she hear it from someone else? Or, and this is more likely, is she just more intuitive than we thought at 6 years old? We never even told her that Hannah’s disease was life-limiting, but obviously it is something that she has thought about.
And then there is Addy and Olivia (Hannah’s soul sister), two beautiful girls who are both diagnosed with type 2. Addy is going to be 2, and Olivia is just a few months younger. I have known these girls and their moms for the past year, and I have grown quite attached to them. Each time I hear that they are going to the hospital, my heart breaks, and it is all I can do to wait for another update from their mom just to know that they are stable so I can breathe. Especially little Olivia, who looks just Hannah (which is why we call them soul sisters)… I just want them to be okay. They deserve to be okay!
Lastly, all of the appointments, the therapies. I found a new pulmonologist who we are meeting next week, and we meet with Hannah’s new ENT this week. Plus her Cerezyme treatments (of which this latest dose is going to be 5 days late because of Genzyme’s 2-per-month rule).
I hate this frickin’ disease. I know having a pity party breakdown right now is not going to change anything. I know I need to focus on the positives and trying to make more positive changes. But right now, I am just feeling incredibly defeated by so many things in our lives — this disease, our financial situation (Daddy’s unemployment and our TX house still on the market), my lack of taking care of myself (I know, my fault), and just trying to find some sense of normalcy in our lives.
I just have to keep focusing on Hannah’s smiles. That is what keeps me going every day.
I am sorry to hear you are so down. have you thought her choking incident this time may have been normal for a baby that was laughing and excited just maybe it went down the wrong tube? I cant laugh and swallow at the same time with out the same result.
Kids are a whole lot smarter then we give them credit for, I am pretty sure Miss A put things togther by herself after all she is pretty savvy when it comes to Miss Hannah.
We are still praying for your house to get sold and for the right job to come around for you. Have you thought about renting out your house in Tx, atleast that way you would not have to pay for 2 mort’s.
It sounds like its time for you to go and take a VERY long bubble bath and maybe a mani or pedi (do them with a friend at home if you have too) Or go and have some of your favorite food and read a good book.
Hang in there!
Sorry you are feeling down it certainly goes with the territory. There have been many times along this journey where I have given up and done nothing but the basic care of my daughter. Sort of a giant FU to the world. I was mean to stupid people, refused to let people merge in front of my, replaced my wave with the bird etc. . . it made me feel better and it did pass and it will pass for you.
Hi Carrie,
I am sorry to hear about Hannah. Your daughter Abigail is smart. I doubt that anyone said anything to her. Children are very smart and they pick up on many things. If your daughter was in the hospital and had tubing or was in a PICU Abigail knows this is not normal. Even if she is only six years old. My brother is 18 months older than I am and he used to come with me and my parents to NINDS for weeks. Now my brother was in gifted and super intellegient and used to ask a lot of questions. When I was very sick before ceradase the doctors at NIH told my parents to put my brother in counceling. They used to have one for siblings of sick kids. Sometimes it is better even if the child is young to prepare them for in general possibilities. There are usually grief counseling places that have programs for the the siblings of children with cancer and such. Sometimes it is better to eplain to them in very simple terms the possibilities. It seems to me that your daughter is smart and can pick up on everyones outward behavior towards Hannah.
I think it’s obvious I’ve been throwing a pity party since May… heck, maybe December? You’re entitled to a pity party every now and then. Our cases are not identical, but the way I put it to my therapist (yes, I broke down and tried the drugs and a therapist) was emotional burnout/whiplash. No good piece of news comes without an equal or greater bad piece of news. Or, usually, it’s just all bad news. Maybe I’m just being a pessimist, but it feels like this has been happening for so long now that my natural optimism has been overrun. I am so freaking tired and tired of it all. I don’t know how you do it with 3 kids.
I’ve tried the mani/pedi route, the facials, hair cut, massage, drugs, therapy, positive thoughts… none of it has helped. I hope something works for you though. Honestly, I think the only thing that *would* work is “hey! your baby isn’t going to die!” and every day the chances of hearing that diminish.
Ack. Believe it or not I was trying to write a supportive, happy comment. Your post, as usual, just hit too close to home. I’ll try to put my Pollyanna mask back on next time. 🙂
My dear Carrie,
How I wish I could be there to put my arms around you and take away all your fears,anxiety,worries,and everything that you are going through. All I can do is just hope and pray for all of you espically Little Hannah. But you are entitled to feel the way you do you know. You are not made of wood! You have emotions and feelings and you have been so darn strong for the most part, so breaking down once in a while and feeling down is not a crime.
The others are right, u need some pampering . Take a bubble bath, get a massage, a pedicure a facial do something for YOURSELF! Hannah would insist on her mommy getting pampered if she could tell you so herself. Really, I am serous give yourself a treat and DONT FEEL GUILTY about it.
Dear Abigale, so young and yet so smart, it does not take someone to tell her whats going on. Kids sense whats goin on around them and they manage to put it all together. By telling Daddy what she felt was just her way of letting Daddy know what she has been feeling and it was probably a relief for her to get that off her little chest. Imagine that poor little child carrying all that weight around, God bless her!
I do hope that Hannahs next appointment with the new doctor will be a pleasant one ond that he or she has some “listening skills”!
Till then I pray for little Hannah and all of you everyday.
Susan