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'...
Thursday, September 12, 2013
Thursday, September 5, 2013
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.
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.
Friday, June 7, 2013
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! :)
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! :)
Saturday, April 13, 2013
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.
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.
Tuesday, March 12, 2013
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!
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!
Tuesday, March 5, 2013
03.05.13
Thanks to a snow day, I now have some time to update our progress since settling back in at home.
Thanks to the feeding pump, Hannah is getting enough to eat each day, though it does mean having to run a slow flow overnight. I'm looking forward to working up to eating enough during the day in order to cut out those night feedings (and maybe get a little more sleep in this house?). We are still cautiously increasing daytime feeds to meet our goal.
The stomach bug that has hit hard this winter finally made its way to our house. Thankfully, Will and I escaped, but let's just say it was a 'poopy' last week around here:)
We head back to Mayo on the 11th for a post-op check and another blood draw- as of Feb. 28th, Hannah's white count was still high at 16. In the words of the surgical doctor team, 'We sure aren't moving mountains, are we?'. The lead surgery doctor did say that as long as it's slow and steady, we shouldn't have to make alternative antibiotic plans.
Now that we are home, I find myself thinking often of our friend Riley, who is still in the therapy unit at Mayo. She is an inspiration to me and I pray to keep the courage that she has. The only plus to making a trek back to Rochester this month is the hope of getting to see Riley! Riley brings out the best in Hannah- she's always willing to share a smile with her:)
The biggest news since we've been back is that my wonderful team of co-workers at Mount Vernon are planning a benefit for Hannah. I know I've said it before, but I'm blessed to work in an environment that treasures my children as their own- people with such big hearts and love for our family. The benefit will be held on April 12th, from 5-8pm. There will be dinner, a family dance (I'm so excited to see my students boogie down!), a photo booth, and a silent auction.
Thanks to the feeding pump, Hannah is getting enough to eat each day, though it does mean having to run a slow flow overnight. I'm looking forward to working up to eating enough during the day in order to cut out those night feedings (and maybe get a little more sleep in this house?). We are still cautiously increasing daytime feeds to meet our goal.
The stomach bug that has hit hard this winter finally made its way to our house. Thankfully, Will and I escaped, but let's just say it was a 'poopy' last week around here:)
We head back to Mayo on the 11th for a post-op check and another blood draw- as of Feb. 28th, Hannah's white count was still high at 16. In the words of the surgical doctor team, 'We sure aren't moving mountains, are we?'. The lead surgery doctor did say that as long as it's slow and steady, we shouldn't have to make alternative antibiotic plans.
Now that we are home, I find myself thinking often of our friend Riley, who is still in the therapy unit at Mayo. She is an inspiration to me and I pray to keep the courage that she has. The only plus to making a trek back to Rochester this month is the hope of getting to see Riley! Riley brings out the best in Hannah- she's always willing to share a smile with her:)
The biggest news since we've been back is that my wonderful team of co-workers at Mount Vernon are planning a benefit for Hannah. I know I've said it before, but I'm blessed to work in an environment that treasures my children as their own- people with such big hearts and love for our family. The benefit will be held on April 12th, from 5-8pm. There will be dinner, a family dance (I'm so excited to see my students boogie down!), a photo booth, and a silent auction.
Thursday, February 21, 2013
02.21.13
YAY! HOME! Hannah is settled in and doing well. Her white count is still too high, but oral antibiotics should take care of the infection that's left. She's on a continuous feed for now and we will slowly ween her into bolus feeds.
We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.
We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.
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