Celebrating and Remembering - 1 1/2 years with angel lungs!

Waiting to for her Bronchoscopy

Today marks 18 months since Elizabeth's lifesaving lung transplant. We celebrate this day because we are grateful for her second chance at life. We celebrate, because each day, month, year that passes is a miracle and miracles should be celebrated.  We remember the family who gave Elizabeth this amazing gift, the gift of life. Each time Elizabeth meets a milestone or accomplishes a new task I thank God for it, and I thank our donor family. No words I say will ever be enough to take away the pain they feel from the loss of their child, but I hope one day my words will show them just how grateful we are for their choice to save Elizabeth's life.

Eating French Fries- Dont judge, its one of the ONLY foods she will eat by mouth :)

Instead of flying this time, we decided to drive to Houston for Elizabeth's 18 mth check up. She had lots of appointments with blood work, xray, chest CT scan, bronchoscopy, and an appt with neurology.  Based on all her tests, and exams she is doing well. They did not biopsy her lungs so we still don't have a "definite" idea of rejection, but since she having no problems right now they don't feel biopsies are necessary. As always the main concern is Elizabeth's airway. Its very narrow and will need to be addressed soon. Before we went to Texas we saw ENT at Vanderbilt and discussed the same issue. So we will have to make some decisions soon regarding treatment/surgery for it. The FILAMIN A mutation and atrophy of her brain from her previous MRI after transplant were concerning to us before so we follow up with Neurology at TCH. Neurology was happy with her development and progress, he said we wont really be able to tell how much her brain was affected until she gets older.  He didn't want to repeat any testing right now, but recommended we get a some testing neuropsychology testing done now, so we have a baseline as she grows. It is common for there to be some learning disabilities with Filamin A so we will just cross that bridge as we get there. Her IGG level was lower than normal range, and could be part of why she has struggled to get over the cold she caught at school. She will start getting monthly IVIG infusions again at least until we make it through the winter.  The IVIG will help boost her immune system and hopefully help her fight off all those germs.  Overall our Transplant Dr was very pleased with how well Elizabeth is doing medically and developmentally.

Kissing Daddy on his Birthday!

Before we went to Texas Elizabeth saw Cardiology and ENT at Vanderbilt. Cardiology did an echo, which showed some possible changes with her heart. So Elizabeth will be having a MRI on her heart November 9th. Heart defects are common with Filamin A, so we are hopeful that this is nothing major.  The Dr wants to get a baseline so he will have a better idea of any current problems so we can address them as she gets older.  When we saw ENT, her narrow airway is still a concern. He wants her to have another sleep study to determine how much obstruction her floppy airway causes during sleep, this will give us a better idea of if/what kind of intervention needs to be done. She is scheduled for it on December 19th.

LONG car ride!!

Janna and I after 13.1 Miles!!

We got back from Houston on Saturday, and I ran a 1/2 marathon here in Chattanooga on Sunday. I ran with one on the PICU nurses who cared for Elizabeth here at home. We ran with Team CMB, in honor of a local girl who ran an amazing race against leukemia. As always my awesome husband got up early and brought Elizabeth out to see me finish my race. They were waiting for me close to the finish line, with a sign that said "So proud of you Mommy - Love Izzabug".  It means so much to me to see her out there when I run. Granted I am not a fast runner, and I take walk breaks. But when I get tired or want to stop, I just think about Elizabeth and hard she fought all those months waiting for her new lungs and how long she struggled to breath. I think about her being paralyzed and wondering if I would ever see her awake again. I remember crying for her, and wishing I could take away her pain. I remember every detail of the past 2 years and I think about the future and what it holds for her, good and bad. I also think about how much she has accomplished in these past 18 months, and how grateful I am for ALL OF IT.  When I run I also think about all the families that we have met along this journey and how we are all still "running our race" in one way or another.

Elizabeth offering "FREE RIDES for 50 Bucks" to all the Marathon and 1/2 Marathon Runners

Thank you all for your continued support!! The next few tests for Elizabeth will determine if she will need future surgeries or treatments, please keep her in your prayers! We hope to make the right choices for her care and keep her healthy and happy for many more "lung anniversaries'.

PRESCHOOL :)

Elizabeth's 1st day of School - NOT the best picture but after 3 hours of crying this was the best I could get!

Elizabeth started preschool in August!! Exciting and scary all in the same. We are so excited that she has the opportunity to be around other kids, to learn, play, and be able to get her therapies in an integrated setting. She is going to Sisken Children's Institute; for those who unfamiliar with this school in Chattanooga, its a center that specializes in children with developmental delays/disabilities but is also inclusive meaning that normally developing children also attend. We feel comfortable sending her here, since there are other medically fragile children who attend there. We know the teachers and staff are vigilant and understanding of our concerns regarding germs, illness, and overall issues with a special needs child. We love the school nurse and feel very confident in her ability to care for Elizabeth.  She gets PT, OT and ST at school in the classroom, which I think is good for her to be able to have her therapies while she is a bit "distracted" by being at school. There are a total of 10 kids in her class, she goes 3 days a week for 3 1/2 hours at a time.

On the playground!

As for Elizabeth, she really isnt sure what to think about school. She cries ALOT, especially those first two weeks. She cried pretty much the whole 3 1/2 hours she was there. I stayed in the classroom or the observation room alot. She did get a cold after week 3 and we kept her home for a week. Shes back at it now, and has gotten a little better with being more involved. She cries when she gets dropped off but calms down at breakfast when she gets a spoon to play with :)  The teachers tell us she is getting more interactive with the other kids. She takes her wheelchair to school and uses it alot. I am sure school has been a bit of a shock to her. She has always been with us or family members, so being around strangers especially kids in a different environment is bit overwhelming for her. But she seems to like being around the kids, and wants to play but just isnt sure what to do yet.


We feel she is making alot of progress with communication. She is using sign language alot more some of the signs she uses are book, more, read, please, thank you, eat, music, love you and a few others. She can also speak words, and has started trying to repeat words. Its an amazing miracle we are so grateful for !! Of course my most favorite word she says is "Moma", I want to cry everytime she says it. There were days I thought I would NEVER hear her say it and it really does bring a smile to my face every single time!! She still refuses to eat much by mouth, but has stated using a sippy cup again (sometimes).

Other good news around here, I was transferred to dayshift!! Most of you know that I have worked 2nd shift before and after she was born and then when we got back from Texas I worked 3rd or split shift. Being on dayshift will allow Matt and I to work while Elizabeth goes to school during the day and we can all spend time together as a family in the evenings. Our parents will be helping with her alot until she starts school full time in January. I am very grateful for the opportunity to have a more "normal' schedule.

Elizabeth LOVES music. She got her very own Itouch to listen too!

We are definately still on "Elizabeth Time" when it comes to making progress. She picks and chooses when she wants to do things, and will do it when she is ready. We are so proud of her!!

Living and Loving Life

Elizabeth and her "new ride"

She loves chips!

Elizabeth is doing SO great. She is saying a few words now, she scoots everywhere, we are working with trying to get her to walk in a gait trainer. She recently got a wheelchair, and loves rolling around the house in it.  She is still doing classes at the Discovery Museum and we also started going to Kindermusik classes. So she gets the chance to be around other kids a few days a week. She's gotten more interactive with the other kids and parents. She has become very interested in books lately. She will scoot around holding them and wanting them to be read to her. She has made progress with eating by mouth, she will eat chips, dry cereals, vanilla wafers, mostly things that are crunchy. Its progress so we will take it. She has also slowly started letting us give her liquids (sprite, water, juice) with a straw. We are hopeful that she will continue to catch on and want to eat/drink by mouth more, and eventually one day be rid of the feeding tube.

Elizabeth and her best buddy Zachary at Kidermusik

Everyday I watch her, and I truly feel like I am watching a miracle. Every time she does something new, It melts my heart knowing how lucky we are to witness these things happening, and at the same time I am reminded of the family that made this happen for her and us. I find myself thinking of our donor family more and more. On days when I get frustrated with things, I instantly feel selfish because I know that for me to have these moments another family lost their child and I should never ever take these moments for granted.

Painting with Grammy

Medically Elizabeth is doing well, no issues lung wise (thankfully). Her most recent blood work looked good, she has labs done monthly to check her anti-rejection medication level, IGG, and nutrition levels. Her airway is still a pretty big issue, we have been to Vanberbilt alot over the past few months for airway dilation/stinting. Basically the dilation/stints are not working, and at this point we can either wait it out to see if she grows out of it or grows enough that a more permanent stint can be placed or she gets worse and ends up needing a trach or surgery to try and fix it. I hate the wait and see game! But at this point we don't have a lot of options. The ENT Dr did tell us that if she gets sick, be prepared that it will be pretty scary. Her airway is so small, that any illness will cause her to have difficulty breathing and to be prepared for that.  Not really what I want to hear, but hopefully we can keep her healthy this fall/winter!

Does NOT LOVE wearing the eye patch

Elizabeth had her 1st dentist appointment and another optometry appointment back in July, which went well. She still has to wear a patch over her left eye, we increased it to 6 hours a day to try and correct the laziness in the right eye. She also saw an orthopedic Dr just to follow up with a fractured vertebrae that was found while we were in Texas. She will be followed by them due to the low bone density and hyper-flexabilty of her joints/muscles just to be sure we prevent and avoid injuries.  She will see endocrinology this week. She has not grown much at all in height, so we will be discussing options as far as human growth hormones and testing to see what if anything can be done to help her. Basically being on steroids since 3 months old has really affected her growth, but her genetic condition can also cause some forms of dwarfism, so we just want to figure out for sure what the cause is and how we can move forward.

The biggest news, is that Elizabeth will be starting preschool within the next few weeks at Siskin Children's Institute here in Chattanooga. We are super excited for her and scared at the same time. Of course we are worried about the germs and her getting sick, but the whole point of transplant is so that she will be able to live "as normal as possible" and I really feel being around other kids and learning from them will benefit her.

I LOVE my Izzabug!!

As for the rest of the summer, we are hoping it will be hospital/Dr visit free :) We hope to enjoy the rest of summer before cold and flu season hit. It will defiantly be a challenge this year with her being in preschool. We head back to Vanderbilt in October for Cardiology/ENT follow ups and then to Texas for her 18 month evaluation.

Hoping for continued good health, and witnessing lots of miracles and milestones!!

1 Year Post-Transplant Evaluation - Houston, TX

Its been a busy week!! We spent April 27/28 Friday/Saturday in Nashville. I ran/walked the Country Music 1/2 Marathon on Saturday.  This race has a special meaning for me, I did it in 2009 while I was pregnant with Elizabeth and part of the course goes by Vanderbilt, where we spent months inpatient. The whole time I kept thinking about my precious girl and how hard she fought to breath for so many months and continues to do at times. It really is motivation to keep going! If she can fight through all that I can make it 13.1 miles!!

Elizabeth and Daddy met me at Mile 12!! The extra push to get through that last 1.3 miles

Sunday we flew out for Houston. Elizabeth had appointments on Mon, Tues, Wed. Monday was lots of blood work, evaluations with PT/OT, nutrition and an appt with her transplant coordinator
 and Dr.  On Tuesday she had her bronchoscopy to check her lungs out and on Wednesday we had our final checkout appt with the transplant team. They are pleased with her progress and based on her labs and how things look, she is doing well. The testing from the bronch will take a few days to come back but we are hopeful there will be no signs of infection or rejection. The best news in all this is that we are 1 year out, so the every 3 month evaluations will now go to every 6 months!!! So we wont have to come back to Houston until October (unless she needs to come sooner). It will be good to have more time at home, and not have to worry with traveling so frequently, or maybe just maybe we can fit a REAL vacation in somewhere over the next 6 months :)

Having her blood draw is becoming more and more of a fight. I feel so bad for her! She had to get stuck 2 times on Monday, 1time on Tuesday and an IV on Tuesday.  This will be a never ending thing since she will have bloodwork and testing for the rest of her life, I just hope as she gets bigger she understands why we have to do this. She just looks so pitiful and mad at her daddy during it! I cant bring myself to hold her down, so he gets stuck being the bad guy.
We fly home tomorrow, and then drive to Nashville Sunday for another airway dilation procedure on Monday, which will be another overnight hospital stay as well. Then hopefully we can settle down and be home for a while!!

So happy to be celebrating 1 year with a good report! Praying for continued health and happiness for our miracle girl!

Celebrating and Remebering -1 YEAR with Angel Lungs

Today we celebrate and remember how much our lives changed 1 year ago. 1 year ago today, Elizabeth received her gift of life, a double lung transplant. Some days, it feels much longer than 1 year ago, and others its like it happened yesterday. Its one of those things that you will always remember the details of the whole day. From the time we got the call, to the time we saw her after transplant for the first time. We spent the first year and half of her life watching her fight to breath and stay alive, to now watching her meet milestones and do "normal"stuff. There's really now way to explain how grateful we are.

I cant even really explain all the emotions that go along with this. Im overwhelmed with happiness in the fact that we even made it to transplant a year ago, and the the fact that she is here a year later is truly a miracle. Transplant living is not easy, and the statistics are not always fun to think about. With the 1 year survival rate being 85%, she has overcome another hurdle in survival. We are hopeful she will continue to "beat the odds", and celebrate MANY, MANY more anniversaries!! The past year has been full of accomplishments, growth, and LIVING for Elizabeth. We realize that we are very lucky to have Elizabeth here with us, and we do our best to make the most of each day. We are not guaranteed tomorrow, we have lived in fear of her dying and were pretty close a few times, and we have seen her life saved and know what a true miracle she is. Our goal is to make the most of the days we have with her and ensure that she lives life to the fullest! We are excited to see what Year 2 with angel lungs will bring for our special girl, praying for lots of accomplishments, filled with VERY few hospital visits!!

Below are pictures from Elizabeth's 1 Year Celebration we had last week. We released over 60 butterflies in honor of her donor. We had an amazing turnout of family and friends, who have been with us every step of the way on this journey. We are SO thankful for the love and support we have!!

We also realize that there is another family out there today, remembering a year ago much more differently than we are. Today I am sure is a very hard day for our Donor Family. We want to remember them and the their loss. Because they chose organ donation, we are able to celebrate Elizabeth's life today. We will be always be thankful to them, and hope to be able to share her story with them one day.  We want them to know how much they mean to us, and how special their child is. Their child will forever be a hero to us!

Thank You for continuing to follow Elizabeth's journey, celebrating the good times and supporting us in the bad. We are thankful for YOU! Encouragement, love and support will continue to be important as we set out on year 2 with Angel Lungs!!

Every Milestone is amazing

I haven't updated in a while, Life with Elizabeth is BUSY!! She is now sitting up and scooting ALL over the place. We had to get a gate to put at the top of our stairs because she is so mobile now! Its amazing to see her moving and playing all over the place. She still doesn't have much of an interest in standing/walking on her own. But she loves to move, so we are hopeful she will get there ~ but with everything, it will be in Elizabeth time!  She has also started eating (a little) she cautiously eats Gerber Puffs in small amounts.  It really is amazing to see her doing things that a year ago, we worried she would never have the chance to do.

Medically she is doing well, no big changes or problems. She does have to wear a patch over one of her eyes for a few months to help strengthen the opposite one. This is an issue she has had since before transplant. We are hoping that the patch will help correct it. We have a follow up later this month. She received her last Synagsis shot (RSV vaccination) last month. I was a little shocked when we were leaving, her pulmonologist said he didnt need to see her for 3 months! Thats a huge milestone for her, since birth (when we were home) she had to see him weekly, and since being home from Texas she has needed to see him monthly.  ~ A little closer to normal ~  Her physical and occupational therapies have both been decreased, since she is making such progress, and we will continue to work on the things she needs help with. We are also going to start going to playgym at the Creative Discovery Museum. It will give her a chance to be around other kids (in a small group setting), and I will be able to be there with her. Her therapist will also attend to help her. Im excited to see how she does around other kids, and in an environment outside of our house! Her airway dilation that was scheduled in March, was postponed due to her Dr being sick. It has been rescheduled for April 16th. She will also have an echo and halter montior for her heart done that day. We will be traveling to Houston at the end of the month for her 1YEAR evaluation. I cant believe that its been a year already. We are truly blessed to have our special girl here with us!

April is National Donate Life Month, I want to encourage everyone to become an organ donor, share Elizabeth's story, and spread awareness in anyway possible. I am thankful for a wonderful workplace that has given me the opportunity over the past few months to share Elizabeth's story during every Inservice class we have had. I will also be sharing her story with the Navy Reserve Center during our April drill weekend. Matt's work is hosting a donor drive next week. We are so thankful for our donor family, and we want other families to have the hope that we have by being able to receive the gift of life.

Miracles Continue

Elizabeth continues to do well. She is super happy and smiles alot. Her appointment with ENT on Feb 14th, went ok, of course it would have been better if the news was great but at least it wasn't horrible. We know she has alot of floppiness in her airway, and they were going to decide on a plan to try and fix it. Elizabeth is scheduled for surgery on March 13th at Vanderbilt. They will take some of the tissue out of her airway, inject steroids in it, and use a balloon to dilate her airway. They will check it 3 weeks after the procedure and if it seems to have helped they will repeat it, and again in another 3 weeks. The Dr said 3 times would probably be the max he would do it, if it helps great, if not we will decide on another route. I hate that she is has to go through this, I know in the grand scheme of things this is a small thing compared to her other surgeries. But it still sucks. We are really hoping that it helps and they wont have to do anything more invasive to "fix" her airway issues. Other than that she is still doing amazingly well. She had continued to gain weight, she is now up to 18lbs 13ozs, still well below the normal range for age, but shes gaining so we will take it! Her anti-rejection levels have still been a bit elevated, so we have decreased her dose again, and will be doing labs more frequently until she is at a good level. She continues to get monthly synagsis vaccinations to prevent RSV, thankfully the season will be over in March/April and she wont have to get the shots and we can venture out more without the fear of RSV and Flu.

  She is still making progress with therapy. Still no crawling, walking, or talking (other than the occasional momma, dadda, or bye-bye). She still has no desire to eat by mouth. But, she is moving around alot by scooting on her back to get to her toys. She babbles alot, and seems pretty content. Any progress is great, and we will take whatever she is willing to give! We are planning to add speech therapy within the next few weeks.

 The weather was really nice a few days last week here,  but was it was super windy. I took her outside just to sit on the steps at our house. It was so sweet to see her reaction to the wind. She would make the cutest face, and snuggle up close to me, then she would laugh and smile about it.  It really is the small things that mean SO, SO much. And I am so thankful that I am able to share in those moments with her. I remember this time last year, when I worried we would never make it to this point.

We continue to be amazed at her progress and her love of life!! Everyday we are thankful for her and the lessons she is teaching us. Its so easy to sometimes get caught up in the "downside" of things and how different our lives are, and the constant what ifs of her future. But different WITH Elizabeth is the only life I want to know!  The what ifs keep me in check and are a constant reminder to cherish the gift of her life.


~We recently (I know late) had some pictures taken for her 2nd Birthday, I posted a few of them below. LOTS of thanks to Boyd&Olson Photography for their awesome work! And my friend Amy for the amazing cupcake!! :) ~

9 Month Checkup in Houston

We traveled to Houston Jan 29-Feb 2 for Elizabeth's 9 month checkup. Thankfully she did well with flying and slept the entire time on all of the flights! We were fortunate enough to be able to stay with our wonderful friend, Shelley and her family during our stay this time instead of at the Ronald McDonald House.  She is one of the amazing nurses that took such great care of Elizabeth during her stay at TCH.  During her visit Elizabeth had lots of labwork done, a brochoscopy,  and a chest xray. We met with the transplant team, dietician, social worker, and genetics during our visit.
Thankfully all of her lab work looks good. They were happy with all of her nutrition levels - which makes me feel better about the home blended diet we are doing. At least I know we are mixing the right foods for her. They did decrease her steroids and one of the anti-rejection meds due to higher levels. The downside of having the higher levels is that her immune system is even lower than "normal" for an immunosuppressed kiddo, so we have to be extra careful until her levels are within normal range again. All of her labs will be repeated here at home sometime next week. During the bronchoscopy her lungs looked good. The Dr is still concerned about her floppy airway. We will be heading back to Vanderbilt to see the ENT Dr there and we will discuss the plan for either fixing her airway (surgery, stenting, dilation) or waiting it out. Thankfully the transplant Dr is planning to discuss everything with ENT, so that everyone is on the same page as far as what needs to be done and then deciding where it needs to be done at.
     We met with genetics during this visit and again discussed Elizabeth's diagnosis with the FLNA mutation. I know in the past I have mentioned it and the fact that it is what basically caused her medical problems. It is such a rare and underdiagnosed condition that there just isnt much research availabile, or much knowledge regarding it. We asked lots of questions about other medical issues it causes, we want to be sure we know what to ask our Drs to look for.  Now that we have "fixed" the lung issue. We have to focus on the other problems that this mutation can cause. Cardiac issues are one of the biggest concerns, so we have to be sure that her Cardioloigst at Vanderbilt is looking for the right things on her echos and that they are being done frequently. She will be seeing him in March, and we plan to discuss everything and make sure he is up to date on this disorder and what needs to be looked for.  Other issues that we were told to monitor closely are her hearing and vision screenings. And of course the hypermobility that this mutation causes, she will need therapy services for a very long time. We also discussed the possiblites of having more children, and the chances of this mutation occurring again. We were told that the possibility is extremely low, the chances of this occurring again would be the same chance of it happening to anyone else in the general population.

   So all in all her 9 month evaluation was very good. The transplant team is happy with her progress, they just want her to gain some weight :) We are very thankful for a good report, and a safe trip. We will travel back to Texas in April for her 1 year evaluation and if all goes well then, her evaluations will be moved to every 6 months instead of every 3. Kind of exciting and scary to me. I almost like knowing that they see her so often right now. But not having to travel that far every 3 months (for a not very fun trip) will be good for all of us.  I am so thankful that she is doing so well, and just hope and pray that she continues too!!

Celebrating and Remebering - 9 Months with Angel Lungs

 
Today marks 9 months since Elizabeth's lung transplant. It has been an AMAZING 9 months, filled with progress and lots of milestones for our precious girl. Not a day goes by that we are not thankful for the family who made this possible.  I wont lie, there are days where the fear of her future and the unknown of transplant life creeps in and I get very discouraged and sad. But I have to remind myself ~ everyday is a gift, no matter how short or long this gift is, we have to cherish it. Elizabeth will be a much happier girl, if her momma and daddy are not constantly sad or worried. Its a hard balance that I fight with, but I'm trying.  We are so very thankful for the continued support we get from all of you. We are beyond thankful to our parents and sisters who go out of their way to help us and support us. We could not do this without you!! Caring for Elizabeth can become stressful at times, and they provide us with the much need rest/breaks that help us keep fighting so strongly for her.

 Over the past few weeks, Elizabeth has been meeting so many milestones, it really is like watching a miracle happen everyday. 

Looking like such a BIG GIRL!!

 

 

Loves standing - sometimes ;)

A new facial expression!

Supporting herself with her arms!

Standing supported during PT

Loves her new "big girl" chair