02.27.14

Settle in, it will be a long one as I’ve gone way too long between updates again:)

I’m happy to say that we are getting settled in to a routine of therapy nights, a live in (soon-to-be) sister-in-law, and Packer football coming to an end for the season.

To start, Hannah is currently having therapy four nights a week as an intensive program to push her arms to the max of what we can make happen. She is very close to crawling, and if she could just strengthen her chest/arms/shoulders, we would be there. She is able to army crawl with assistance and can sit for a long time on her own. (Her crazy hair is starting to be a bit less crazy with more sitting.) We are also starting an aquatic therapy class in April, so long as they allow this lady to be in a swimsuit around other humans- I’ll be sure to warn everyone I’ll be stepping out in less than parka coverage:)

Eating has been going well. Hannah eats more calories a day than an average adult, but it seems to be working! We are up two pounds and hope to keep climbing. This princess is tall and already wearing 24 mo/2T clothing. It’s bittersweet to know how old she’s getting.

We ordered glasses for Hannah. She could not possibly be more cute in them. There's a chance that she will need to have eye surgery to correct a wandering left eye, but it's not something that we need to rush. We are also trying to avoid getting tubes, and are hoping that both ears drain enough to pass a hearing test. We head back to Mayo in April, but hopefully not for a long while after that! She is so happy. Really, truly happy. 

Eli is being three. He is stubborn, loud, and says some of the funniest things I’ve ever heard. Lately, he’s been making up words and definitions to go with them. He likes to play with Harley, kiss his sister, help me make cookies, cuddle with Amanda, facetime with Uncle Butt and Uncle Tyler, and just learned how to arm wrestle with his dad.

With Will traveling for work more lately, we have been very fortunate to have Amanda around to help with the kids. Between therapy and needing to get Eli, she’s been a huge help. We have also been thankful for Grandma Dee- she seriously saves my behind more than one person should…picking me up and driving me to school when my car battery was dead, filling in as a wonderful babysitter, and letting me watch her beautiful kids grow up.

Sundays are a bit quiet around here with no ‘Go Pack Go’ directed towards the TV, 

but we are enjoying church and lazy mornings with the kids on the weekends. Last weekend I was especially lucky to spend church with my Uncle Rex, Aunt Val, and Grandma in Manchester. LOVED hearing Val sing and praising God with family!

All around, we are hanging in there. Nights get a little crazy, but it’s worth every minute when somebody tells us how big Hannah is getting and how much stronger she looks. We are blessed beyond measure. 

10.21.13

What can I say about tonsils? To start- thank goodness a person is only born with one set to ever need to be removed!

Last Wednesday, Hannah had her tonsils removed and botox injections into her two main salivary glands. This turned out to be the worst day in the hospital we've ever had. The tonsillectomy was fine, but when they were injecting the botox, a minimal amount leaked into the surrounding area. Unfortunately, we had to wait four days to find out whether or not there would be damage to the nerve that controls the lower lip on her right side. Thankfully, we've haven't seen any damage, and that means that the tissue immediately surrounding the leak absorbed enough that the botox did not touch the nerve.

After the surgery, Hannah's mouth started to swell. It was so swollen that steroid breathing treatments and steroid injections wouldn't work. Doctors discussed needing to put a breathing tube in, but with having just performed surgery on her throat, the team decided to place a tube down her nose that would curve forward and push down her tongue down to allow air flow. This helped, but wasn't quite enough. So, Hannah was also placed in an oxygen tent in her crib. Overnight was rough as well, with Hannah's oxygen levels dipping into the seventies and eighties, and little sleep for her with trying to regulate pain management. 

Our last obstacle was constipation. Between a mixed up food schedule, surgery meds, and pain meds, Hannah's plumbing was just not moving. I've never been happier to clean up an up-the-back, all-over-the-crib blow out. Who knew the joy poop could bring in parenting.

Finally though, after LOTS of prayers (many from our prayer warriors- THANKS!) and a good poop, we are getting back on track. We have the best daycare lady, shout out to Betty, who always takes our Han even when her life would be much more peaceful without her some days. 

Our next month will consist of- knock on wood- NO TRIPS TO THE HOSPITAL! We will spend the entire month of November in preparation to Thanksgiving, remembering how grateful we are for our family and friends who support us each step of this crazy life.  We are especially excited for Justin to come home safe and sound! Can't come soon enough...

09.12.13

Our Mayo update:

Glad to say that we are back home and only have one appointment left for this recent round of tests- a hearing test. We opted to have this done at Grant Wood to take advantage of their free hearing screens. 

Preface: Over the last week, I have (sort of) successfully switched Hannah to a blenderized diet. She still has to have a bit of formula overnight to make up for calorie needs, but as I am getting a better handle on making our own blenderized food and increasing calories without increasing volume, we aren't too far off goal. Yes, it takes a lot more time than mixing formula, but is so worth it. Hannah has not down-cycled for a week now. That is huge progress. She is more happy, she's laughing, more active and she started with 'ba' and 'da' noises! We are thrilled, and very thankful to have this happy girl back.
As for Mayo test results...

Blood tests for the metabolic panel will not be back for a few days/weeks. These would show if a metabolic problem could be to blame for this down-cyclic business (I'm hoping not as there may not be a 'fix' for a deeper metabolic issue).

The GI team seems relatively happy with the blenderized diet results so far. They have a very relaxed approach to what I feed her so long as she continues to gain weight. 

ENT, pulmonology and the sleep team have joined forces as of late to help with Hannah's lung issues. The results of her sedation this week showed that there is still lung damage happening. Weak muscles in the throat and airways can still be seen. The results of her sleep study showed that she is having apneas that are 4-6 seconds long. ENT still believes that Hannah's swallow is safe and the swelling and aspiration in Hannah's airways is not coming from swallowing. All together, that means that the most likely scenario is that while Hannah is sleeping, saliva pools in the back of her throat where muscles are weak. She will have an apnea for about 5 seconds, and then take a deep breath in, sucking all of the pooled saliva right down into her airways and lungs. There isn't really a good fix for this, but the damage will only continue to get worse if we don't do something. Options on the table include botox injections to the salivary glands, a CPAP machine, various medicines and lastly, a tracheostomy. Obviously, it will take a lot of convincing for me to agree to the last one. 

Finally, the hearing screening today will be a good indicator of whether or not the fluid in Hannah's ears is causing problems, or just draining very slowly and is nothing to worry about.

Between this new diet and needing to make a few decisions for lung treatments, we've got a bit on our hands, but it sure seems more do-able with this happy girl we've gotten back. She is such a little blessing! Now, to get her to say 'ma, ma, ma'...

09.05.13

Is it really September already!? 

Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...

Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.

At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests. 

Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort. 

We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.

For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.

One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.

06.07.13

What a roller coaster the last couple of months have been! 

April was our best month of therapy yet! Hannah is getting stronger and more vocal- she has open happy laughs that just melt my heart:)

May brought a bit of frustration for this mommy. An ER trip at the end of April revealed a wicked case of pneumonia- no fever, no fussing, just a sleepy little girl who didn't want to open her eyes for four days. Unfortunately, when Hannah sleeps like this, it's almost that her body slows down in all ways. She's lethargic to the point of not being able to hold up her head and even her food processing slows down, so much that she ends up not getting enough to eat. After a round of antibiotic for the pneumonia, Hannah's lungs were still a little crackly, so the doctor decided on a second round to clear everything out. Hannah's belly disagreed with that decision and as protest, she shut down again. After a second trip to the ER, we discontinued the antibiotic. Finally, things improved and we could get back on track with therapy and getting stronger!

Until Hannah got another cold. Her lack of ability to swallow secretions caused Hannah to choke and gag and do something that looked a lot like small seizures. Trip three to the ER was quick, but only because they sent us on to Mayo. Three days later, it seemed that what could have been seizures were probably (and hopefully) not neurological. Once Hannah was closer to normal, we got to go home just in time for my last day at school! And, then trip four to the ER. Hannah didn't feel good and as usual, decided to go to sleep. After three days, she was too dehydrated to stay at home and we took her back in for what ended up a four-day hospital stay. We got home yesterday, and Hannah smiled, laughed, and made lots of happy noises all night to let us know she was happy to be back home.

Yes, it's been a bit stressful in our house lately, but we've also got a lot to celebrate:
-Will is officially graduated! He's done, done, done with school! He's VERY happy.
-At the banquet for his graduation, Will was awarded with runner-up apprentice of the year! We are so proud of him!
-Eli is super excited about spending some time with Hannah and I this summer. Story time, walks, a blow-up pool, and loving on Hannah are all on his horizon. His favorite word is 'no'.
-Hannah got the go-ahead to start trying oral feeding. It is slow, but it's a start, and we will get there!
-I've been able to connect with another mom of a CDC daughter. Olivia is a beautiful little girl that inspires me and what we have to look forward to with Hannah. Her mom, Tiffany, is fantastic as well, and has been a great support in honesty and answering questions that I've had. What a blessing to have found her and her family's story!
-We have summer ahead of us, beginning with a trip to Milwaukee for a baseball game, a trip to the zoo, and some much needed relaxation at the hotel pool!
-Best of all: I slept in my own bed last night...Take that hospital window bench! :)

04.13.13

We are so blessed! What an incredible outpouring of love at Hannah's benefit last night!

I find myself beginning to say thank you and realizing over and over again that I have no words to express the thanks that we have. (Will would argue that this is a miracle as he thinks I ALWAYS have words:) We have been humbled. We have been blessed. There truly are no words to explain just how thankful we are. 

In addition to the financial support, we want to say how very much we appreciate the thoughts, prayers, anonymous notes of support, and encouragement that we've been shown in the past few months. Thank you.
 
When we had Hannah, I planned out a life in my head. A life of learning to crawl, walk, talk, school, rainy soccer tournaments, hoping she wouldn't really like soccer... I pictured awkward middle school growth spurts, the first broken heart, graduation, the man that would never break her heart... I hoped for normal, without ever realizing that there would be an alternative.

Now I cannot imagine anything other than what we have. 

Each day I better understand the gift that God has given us. Hannah is exactly who she was meant to be. God does not make mistakes- I believe that Hannah was sent to inspire His love. I saw it last night, I see it in Hannah each day. She brings out the best in people. Every person who was able to attend the benefit can attest to the love and generosity that brought the community together over a little girl most have never met. What greater love is there- than to love your neighbors?

My heart overflows with gratitude for your kindness and love. We love you all. Thank you.
 

03.12.13

Short Update:
Hannah and I made the trek to Mayo early on Sunday due to the storm headed that way. It was a good choice, as Rochester got 10.5-12 inches overnight. Hannah's post-op check went well, I will be able to change the g-tube at home from now on. Her white blood count is still too high, but the surgeon believes it is related to inflammation in her belly rather than an infection. No more meds for the infection, but we need to keep a close eye and watch for fevers and pain, etc. 

Hannah is doing well with her feeds and we are about ready to switch over to just bolus feeds! Soon we will sleep all night long!! YAY!