We had to do Bella’s adoption finalization over the phone. There was no way that Bella could travel to California. So the picture on the left is the Judge and our attorney and then there’s us. So very happy. FINALLY. She is ours. Ours. We love you little girl. Welcome to the family, officially. Happy tears.
Sleeping in her stander. I teased her PT that she is working my girl hard! :)
My Bella is growing up! She has become a Mama’s girl. She wants me to hold her all day long – every day. Her nurses are delighted that she has made this big development step, but let’s just say it makes their job a bit harder :). The 2nd picture makes me laugh – because she was such an accepting baby of anyone, now she let’s her wants be known! :)
(About the bows – one of my nurses likes bows – a lot)
Endocrine yesterday. She really wants to see what that thyroid is doing. So, in one month we will have a CT scan with iodine – it’s a 2 day scan. That’s going to be a long week, but hopefully it’ll answer some questions.
My Mom and I were talking about this today – I really feel like Bella has turned a corner. You can just see it in her eyes. You can feel it in her energy level. :) I’m not naive enough to think that she is all better or that we won’t have bad times in the future again, but she is healing. She is growing. She is doing great! The pollen is pretty much over down here and I can tell – Bell was off the vent for 1 hour and 45 minutes today! Wahoo! I am so excited for this new road we are traveling now.
We have a new camera – look at our girl!
Bella finally did it! She has wanted to do this for so long – she sat up!
She has to have minimal support now to stay upright – but wedged in the cradle of her Nap Nanny she did it this morning! It happened just at shift change too – we were all so proud!
We went downtown twice this week. Some friends of ours, Greg and Kristin Lyman, found us today and brought Bella this cute butterfly balloon! So thoughtful – thank you!
Results from the docs/tests: anemia, she continues to lose weight for the 4th month in a row, consolidation in her lungs behind her heart, heart function not significantly different than 3 months ago (mild regurgitation in valves, right side a little larger than normal, and severe pulmonary hypertension. She also has a misshapen valve, but it’s working), she won’t eat for many years, and she has the gene that predicts Celiac disease. They said it doesn’t mean she has Celiac Disease, but 95% of patients with CD have these markers. She is currently on a gluten free diet, so there is no problem right now. Her decreased emesis does seem to coincide with the time we changed formulas, so a lactose sensitivity is suspected. Her Upper GI, though, was great. She didn’t reflux – a miracle. :)
We have been getting a lot of rain – thank goodness for xopenex. I’m grateful that it works so well. I am also working on decreasing her robinal. Her secretions are getting so thick, she’s getting mucus plugs.
My 9 year old said to me, “Mom, I wish I had Down syndrome then I could touch my nose with my tongue.” :)
Joy and Bella playing together – I love it!
Today’s appointment was a thyroid ultrasound. There is something up with that thyroid. I was ready to be done with her thyroid, but her thyroid isn’t done asking for attention. Two techs worked on her, looking and looking for any thyroid tissue. As you can imagine with no neck and a trach – this was a difficult case for them. Finally they brought in the radiologist to look. He couldn’t find anything either. The phrase “nuclear medicine” was tossed around. Ugh – we’ll see what the endocrine doctor wants.
But on a bright note – Bella looks fantastic and is loving playing with her sister!
I don’t know – which would you choose? ICU days versus being at home with family.
We had our Pulmonology appointment yesterday. It went well, I guess. He increased her heart med. He significantly increased her sildenafil. Since the last time we did that, her blood pressure bottomed out (40/20), we are gradually increasing it till we get to the right dose. We had 2 chest x-rays and an ECHO.
He doesn’t believe our 2 months of total vent dependence is only allergies – hence some of the tests and the added antibiotics. He also wants her to do HME trials for 15 minutes twice a day. Gulp, swallow. I explained the retractions. I explained my fears. In his kind, grandpa way, he asked me if I was taking happy pills. :) He was joking – we have a wonderful relationship and joke around with each other. I dearly love this man – but I have been thinking a lot about what he said. I am afraid. Seriously afraid of being off the vent. I hate to watch her work so hard. I hate to see her retract. I hate it. It takes me right back. Back to a very bad place. One where I have no control. One where my baby is fighting for her life. I don’t like that place – at all. But I think I am holding her back by my fears. My fears. My fears have kept this child alive. Several people have told me that she is alive because she is in this home. I don’t say that for praise or to sound conceited. She has needed so much support. But she is better. She can do this. I can do this. I need to let my fears go. The ones I hold hard to. We tried an HME time this morning – after OT and before her ambulance comes again for another trip downtown this afternoon. Her heart rate shot up 10 points right away, so I grabbed her and held her. Why make her work any more than just breathing? She calmed down – I was sending calming and confident vibes :) – I don’t want to hold her back. As the minutes ticked past and I sang to her, her breathing got harder and faster. Poor sweet little love. 13 minutes I called it – she was getting upset. Done. We’ll try again later. She can do this. She has been there before, we can go back there. I really, really would love to have her off the vent. I dream about it – she will be able to do so much more. She’ll be able to interact more with the family. But her vent is my security blanket. It makes me feel better, calmer. It’s a protection against the bad place. Sounds like the doc is right. I want to do the best for Bella and I have to be rational to do it. I don’t think I’m ready for the neighborhood shrink, but I do think it’s time for some more thinking, writing, processing, and praying. Bella needs a good Mama. I love ya sweet girl!
The Cub Scouts from church asked if they could come meet Bella. I gave them a quick lesson so they wouldn’t be scared of all of her equipment and then they got to meet our girl – yeah! I was glad. The more people that get used to her, the better. She won’t live in her room forever. I’m hoping one day to have her totally integrated into our lives – outside the house as well.
My PT isn’t thrilled about exercise saucers but I have one and we used it for the first time this morning. I was happy that her trunk control was good enough to go in there and play with new toys. She loves to play. I’m always trying to think of ways to keep her entertained.
I love that these girls love each other. Playing and talking together.
Our doctor’s appointments this week: Eyes, GI, and labs
Eyes – Far sighted. If we don’t see a big improve in an year, then we’ll get glasses at that time. By the way, she HATED that appointment! Eye drops and bright lights – no fun!
GI – Not good news. She put her on another med to move her food along quicker. She has a slow moving track. Her bowels sounds are hypotonic – just like the rest of her. :) She ordered another Upper GI. And she said that it’ll be years, if ever, that she can eat by mouth. Oh. Not what this Mama wanted to hear. Oh well, she is a sweet beautiful little girl. If she doesn’t eat by mouth, she doesn’t.
Labs – what a trial these are! They wanted the home health nurses to start doing them. Small problem. These nurses don’t do sticks often and Bella is a hard stick – even for seasoned pros. So two different nurses tried. All they succeeded in doing was making bruises. Then we went to TCH and had them do it. They have a 2 stick policy – they don’t want to have to stick more often than that. It took 45 minutes and we still didn’t have all the blood we needed. We have more labs for later in the month. We’ll try to finish our labs then and get the news one all at the same time. I wish this part was easier for her. Breaks my heart.
Of late, Bella has been staying up later and later. She doesn’t want to go to sleep. She wants to PLAY! The Queen of Sheba!
It doesn’t matter that she has two doctor’s appointments, labs, and the commute downtown in the ambulance tomorrow morning – all she wants to do is play! :)
When your nurse calls out and you have two kids with doctor’s appointments, what do you do? You go.
I let Becca talk me into just using Joy’s stroller instead of taking her wheelchair. I should have taken her wheelchair – it has room for all of her equipment – that vent gets heavy on the shoulder! :)
I think things went well. We got all kinds of looks and we had to give some xopenex and do some suctioning, but Bella truly seemed to enjoy being out and about. People were really curious and we got lots of sideways glances. :) The nurses just openly stared. I thought that was funny. One sweet Mom walked up to me and in her broken English told me that her 11 year old son was once on machines, and now he doesn’t need them anymore. She told me Jesus did it and I should ask Him to bless her. What a sweet lady! To take the time to try to encourage me. :)
As you can see in this short video, she was in a great mood today!
My sister informed me I didn’t say if the GJ got back in or not. Yes, the next day we were so blessed. Our ambulance company had an opening and we hustled down there and got that popped back in. The pollen was still high, so we had a little problem on the way home, but nothing major. Yeah!
The rest of the week – she made some great strides in therapy. Her OT wants her to see what a cup is like – no drinking yet 
Her OT uses this vibrator – and Bella LOVES it! With vibration, she will allow us to touch her mouth – yeah. We are going to beat that oral aversion yet!
PT – We figured out how to attach toys to the tray of her stander. I am so proud of her for putting weight on her arms.
Becca doing her own therapy with Bella :)
Joy adores Bella!
Happy Easter!
