No Surgery

I have been meaning to update for the past week and things just kept getting in my way, I’m sorry! I wanted to let those of you out of the loop know that Grace did not have her oral surgery as planned on November 9th. She started to run fever a couple of days before and therefore was not healthy enough to go under the general anesthesia necessary for the surgery. Fortunately she spiked this fever before we left Mobile, so we were spared the 6 hour drive! Her surgery has been rescheduled for January 11th, so all in all this is a better date for us anyway! 

The cause of the fever was a respiratory virus and is all gone now. She has also had extreme trouble with her left ear over the past month and has been in and out of the doctor’s office for it. Although she was on two different antibiotics, they were not enough to help ease the fluid and it ended up rupturing her ear drum. Although painful when it happened, it helped all that fluid/infection drain out and allowed us to use antibiotic ear drops thus allowing us to get to the source. Ever since finishing up the drops, her ear has been better!

She just received her first round of Synagis for the year (RSV antibody shots) and although I hate to see her in so much pain (they say it burns like shooting rubbing alcohol into your thighs), I am so very thankful to Dr. Hunter for staying on our insurance company to cover them again this year. These shots are incredibly expensive (around $5,000 a month for 9 months.... i.e. $40,000 a year!!!!) and not a possibility without insurance coverage. This is Grace’s 5th RSV season (hard to believe, I know!) and typically these shots are only covered for 2 seasons sometimes 3. We thought we were lucky last year when she got them and are beyond thrilled for this year. RSV is a serious respiratory virus that can get a healthy child down and out for about a week or more, but in a child like Grace it would mean weeks, maybe months, in the hospital, possibly on a ventilator, with her scarred lungs from her bout with PCP two years ago. So, we are all for anything we can do to prevent her from catching it!!

Grace dressed as "Belle" from Beauty and Beast for Halloween

Native American Princess for school program

She had her Thanksgiving program at school last week and she made the most precious native american princess I’ve ever seen! She had a blast singing her turkey songs and having me and Pop (my dad) there to eat lunch with her. She is continuing to love all things school and can even write her name now! (It does take a mother’s loving eye to recognize that the scribbles on the paper do somewhat resemble a G, R, A and C ... as she routinely leaves off the E... but I count that as writing her name!)

As we approach this Thanksgiving week it is easy for us to recognize what we have to be thankful for in our lives this year: Grace’s continued good health, happiness and her body’s continued acceptance of her heart. We are beyond grateful for the donor and his/her family and as always pray for and wish them peace, love and happiness, but add extra prayers during the holiday seasons as I know they must be hard. We are so grateful for our family and friends who have formed this village helping us to raise our sweet child. Thank you all so much!!!

Surgery scheduled

We made it home from our 36 hour rendezvous in Atlanta... and the results of our 10 minute follow up consultation with the transplant dentist: surgery is needed. This was totally expected, so it did not come out of left field, but we are still slightly bummed to have to put Grace through yet another procedure. 

For those not familiar with Grace’s oral background, her main immunosuppressant (anti-rejection medication) causes her gums to thicken and thus not slough off (as our skin does). What this has done is cause the gums to “grow” over her teeth in some areas and also caused some of her teeth to shift. In addition to these issues, it has also caused thick calluses to grow where her two year old molars need to push though. So the reasons for surgery are: thick, callused gums, shifted teeth and the risk of bacteria build up under the thick gums. 

What the surgery will entail is using a laser to cut off the excess gums and then using some kind of cauterizing iron to flatten them out into place. The doctor said that because Grace’s gums are very healthy there should be minimal bleeding and thus minimal pain. It sounds pretty horrible to me, but he promised. It is done outpatient, but under general anesthesia. He said in the 9 years he has been doing this procedure on transplant kiddos he has only had to admit 2 overnight due to pain maintenance. Her surgery is scheduled for Nov. 9th, so she should hopefully have a great set of chompers ready just in time for Thanksgiving turkey.

We will keep you guys posted! Please continue to keep her in your prayers for a safe journey and surgery. 

Thank You!

Helen

Overdue Update

I can' t believe it has been nearly two months since my last update. No news is good news, as they say! Grace is still doing phenomenally well in school. She is soaking it all in and I'm so proud of all the things she is learning. She is singing songs, writing ABC's and all things 3 years old! She is having so much fun playing with all of her new friends and is in love with her teachers. We really couldn't be more pleased with her first real school experience.

She has come home sick, but she managed to catch everything at one time so that she didn't have to miss out on too many school days. ;o) She had a stomach bug, ear infection, tonsillitis and a cold all at once, but she is such a super trooper she only stayed down and out for one day then she was back in action, although we kept her home for several more days. We still see the effects of the pneumocystis pneumonia (PCP) she had almost two years ago and when she gets a respiratory infection we have to bust out the inhaler due to her scarred lungs. I'm not sure if this is permanent or not (I'm guessing yes at this point), but it sure beats the cystic fibrosis vest they first spoke of sending her home with!

We have been otherwise keeping busy. Grace still loves ballet and is doing very well in the class. She struggled at first following directions because she just wanted to jump and twirl, but she seems to have finally gotten the hang of it. We went to Seward Farms this past weekend and had a blast weaving through the corn maze, riding the cow train, taking a hayride and just generally goofing off. We are geared up for Halloween and Grace is so excited to be "Belle" from Beauty and the Beast.

We will be making a trek up to Atlanta this Thursday for a follow up visit with the transplant dentist. He will be re-evaluating the molar situation and determining the best course of action depending on the results. I have a strong feeling that the result will be a trip to the OR to help the ease the molar down (and flattening out the overgrown gums while there), because Grace has not been a fan of the medicine we are to brush on the back molar area twice a day and doesn't let us do it properly. I haven't seen a whole lot of progress, but we will wait to hear what Dr. T says.

It has been almost 4 years to the day since we heard the words that forever changed our lives... "I don't see a fourth chamber in the baby's heart" and "oh the places we've been!" Dr. Suess didn't properly prepare us for this journey, but I think we have managed as best as we could have. I had no idea I would/could one day learn just what a miracle a single heart beat is and just how amazing the human body is.

I will post an update after the appointment on Friday. Thank you for keeping up with us! Please keep us in your prayers for safe travels and a good appointment!
Helen

First day of 3K!

I just don’t know where the time goes!?! I can’t believe it is already September and it has been a month since our last post. We have been busy! Grace started 3K at Gan Shalom last week and LOVES it! Her teacher is wonderful as are the other little boys and girl. Ummmm yes, I meant for that to be singular, There is only one other girl in the class... 7 boys and 2 girls!!! I bet Ms. Lesli has her hands full this year! Grace has made fast friends and I am really happy we decided to send her to the summer program because I think it helped tremendously with her transition. She was able to once again walk right and and make herself at home without shedding a tear when it was time for me to leave. Just a big hug and kiss and a “Bye Mommy! See you in five minutes!” 

This 3K program is serious business! She has a class schedule and responsibilities and I think they are already working on their college essays! All jokes aside, this really is a top notch program and I couldn’t be happier with it all. Her teachers and the school director say she is doing very well and her progress reports have come back with all positive remarks. SHE IS EVEN EATING LUNCH!!! Wahoo! It really is a case of “monkey see, monkey do” I think.

Her ballet class starts on Wednesday. We went and purchased her “uniform” and she got all dressed up and was twirling around her playroom and pointing her toes. She is so excited. I know she is going to have a great time. Her tumble time class at school is also on Wednesday. I hope this isn’t too much for her in one day... we shall see!

Later this month we will once again be heading up to Atlanta for the transplant dentist to check out her molar situation. We will update after that check up with the results... or her “surgery” date. 

Here are some current pictures:

First day of school!

All dressed up in her ballet outfit.

So happy!

Looking too grown up!
Thank you for keeping up with us and please remember our donor family in your prayers.

Another trip to Atlanta

At Grace’s last transplant check up we were told her gums have reached the point that it was time to talk about “our options”... meaning a procedure to cut away the excess gums and allow her teeth some room (they call it surgery, but, calling it surgery seems excessive in comparison to her background). One of Grace’s medications... actually, the single most important medication she takes (her immunosuppressant, Cyclosporine), causes excessive gum swelling (and hair and fingernail growth). So, last week my Dad, Grace and I loaded up in the car and took another trip to Atlanta to visit the transplant specialty dentist.

When we got to the dentist’s office, Grace announced she wasn’t going to “take a shot.” :) Poor, sweet girl thinks every doctor’s office means lab draws. After we informed her there would be no needles involved in this trip, she relaxed and did phenomenally well!

We originally thought this visit was essentially just a pre-op evaluation and a chance to meet the doctor before “the procedure” since we already have a dentist in town. But, after looking at her gums he said he didn’t feel she needed the surgery right now! He said her gums and teeth are very healthy and although swollen, her gums are okay to watch for now.

He then looked in the back of her mouth and noticed her two year old molars on her right side are not in, but they are in on the left side. He said at her age (3 1/2) this concerned him slightly because of her medication. So we went off to the panoramic x-ray room where Grace stood on a stool and still managed to be too short! So we had to rig a contraption so she could fit and she stood so still that we were able to get some great pictures of what was going on inside her mouth. What this x-ray showed was the molars are present, but trapped behind some thick, callused gums and if we don’t address it soon it has potential for fluid to build up and cause even greater problems down the road. He prescribed some medication for us to apply to her gums twice a day to hopefully reduce the swelling and the callused skin. We will continue this for 6 weeks and then we will head back up to Atlanta for another x-ray. We are hoping this medication will work on her other swollen gums as well and help to reduce some of the excessive gums she has around her front teeth. If there is no significant change in six weeks, then Grace will unfortunately have to have “surgery” (again, this word seems excessive) to cut the thick, callused gums away and allow those molars to grow down. He said since she will have to go under general anesthesia for the surgery, he will go ahead and cut away the gums around her other teeth and “iron” them out. Let’s hope the medicine works so she can avoid another painful oral procedure!

While he had Grace in the exam chair he went ahead and checked her teeth and said we do a good job keeping her mouth clean and healthy and welcomed Grace to the NO CAVITY club. This is apparently a major feet for someone who has gone through her medical background, so it felt really good to hear him say it! He also polished her teeth and when he finished, Grace asked him to do it again! She LOVED all the tools and even the gritty toothpaste and the “teeth tickling” (scraping plaque with the hook thingy... which she had almost none of!).

Thank you all for keeping up with Grace and her progress. We have a big month ahead of us with Grace’s first day of 3K quickly approaching. She LOVED the summer fun program we sent her to this summer, so I have no doubt that “real” school will be no different! She will also be starting with a new speech therapist as well as taking a tumble time class and ballet lessons. She has shed all of her shy behaviors and really grown up a good bit over the past few months. I know this can all be directly attributed to how well she feels right now. It is such a blessing to watch her enjoy life and run and play the way she was meant to. I am constantly amazed and inspired by her and thank God for allowing me to witness and be a part of His work in such a constant, hands on way. Thank you for being a part of our journey and please continue to keep Grace in your prayers during this busy season... which can also mean germs! Please also say a prayer for our donor and his/her family.

Helen

Transplant Clinic Visit

We just finished up our Transplant Clinic visit and everything is still looking good! Her echo showed great heart function and Dr. Mahle and Kelsey (one of her transplant coordinators) thought she looked great. The only thing mentioned as something we need to address soon is her swollen gums. This is one of the big cosmetic side effects of her main anti-rejection medication. We have been keeping an eye on Grace's for a little bit and it has finally come time to do something about them before her teeth shift anymore.

Grace is now 3 1/2 years post transplant, time sure does fly! When I walk around the hospital, it is sometimes hard for me to believe that if you total all her "visits" we have spent about 9 months out of those 3 1/2 years "living" there. What a relief this year has been with NO hospitalizations due to illness. Grace is doing so well, not just medically, but developmentally as well. She has been loving her "summer fun" program and loves her teachers and friends. Her vocabulary is skyrocketing as is her defiance, but it is all part of the three year old package, I guess! She is super inquisitive and has really enjoys "make believe" play time. She also enjoys playing dress up (although she is more into pirates than princesses!) and doll house time.

Thank you for your thoughts and prayers! Please also remember her donor family who gave us such a wonderful gift.

Helen

Oh to be three again! Grace is full of so much energy we can hardly keep up with her. She is talking more and more, and her teacher told me today was her "best day yet" at school. We have been working hard teaching her to swim this summer and have had success at about 5 feet. After that point she is so proud of her new found talent that she stops to tell us about it and forgets that if she stops kicking her feet and moving her arms that she will sink to the bottom. She is getting really close though!

We have been staying out of doctors offices this summer and will hopefully continue to avoid them until Grace's transplant check up at the end of July. It has been six months since we were up there last and it feels SOOOO good to be able to have made it the full six months without any hospitalizations. What a difference a year (and a new medicine) makes!

I will continue to fiddle with this site and hope to get some new pics up soon. Please continue keep Grace in your prayers for a healthy 3 1/2 year check up and safe travels. Also, please continue to think of our donor family who gave us so much!

Helen

Back on the Web!!!

We are finally back to blogging! So much has happened since our last update in March, so I will try to just hit the highlights...

We spent most of April visiting doctors. Grace got her first big respiratory infection since her bout with pneumocystis pneumonia two winters ago. It was a nasty infection that just didn't want to let go, but after several rounds of antibiotics, steroids, bronchial dilators and some good ole' TLC she was able to beat it without a hospitalization!!! We have otherwise been able to stay healthy.

Grace had a check up with her GI doctor last week and he was so pleased with how she is doing with her weight and height. She is in the 10th percentile for weight and finally made the chart at the 3rd percentile for height! She is eating a variety of foods and getting most of her calories by mouth. Dr. P said that as long as we keep watch on what she eats and make sure she is getting enough calories by mouth we don't have to run the feeding pump! Hallelujah!!! That pump is my nemesis! I have felt that for the past 6 months it was counterproductive and I am so glad to be able to back off and let her actually get hungry and eat! This has been a long time coming (18 months) and we are SOOOOO happy to almost be done with the "tubie" as we call it at home. We are going to leave the MIC-KEY button in place for at least another 6 months, possibly up to a year, but having a deadline, even one far away, is wonderful in and of itself! The real miracle of this whole battle is that Grace eats! I have written about this issues before, but until you live them, it is really hard to explain what a huge deal her eating enough by mouth really is, and just how much work it took to get her there. Just to put in perspective, over the past 18 months Grace has gone from only eating 100-200 calories a day to 900-1200 a day. We owe a lot of credit to her speech therapist who worked with us in feeding clinics every week for several months and to the appetite stimulant Grace started taking.

Probably the biggest change in our lives right now is that Grace started a school program this summer. We originally thought that we would wait to start her in the Fall in a 3K program, but were worried about how she would handle the change. We decided to send her this summer a few days a week to a program with my nephew, Samuel, thinking that a familiar face would help with the transition. Grace did wonderfully and didn't even flinch when I went to say goodbye. She just turned right around and said, "Bye Mommy! See you later!" and jumped into the games. She has been going for 3 weeks now and loves it. She continues to be excited to go and play with her new friends. She is really blossoming and we are enjoying all the fun times having a 3 year old can bring.

I am glad to again have a place to update and look forward to more regular updates. Pictures to come!!

Helen