In May we took a trip to Boston for my brother's senior trip. We have had this trip planned since last summer. So naturally in April when Madilyn's health condition happened, we were afraid that we would have to skip out on the trip. We spoke to Maddie's Neurologist about the trip and flying and he gave us the go ahead. He told us that we need to treat her like a normal little girl and live life. The trip couldn't have come at a better time. We were in need of a getaway to say the least. This was her first flying experience and I was one nervous momma... I didn't want to be that mom who let her baby scream the entire flight. I remember before I was married and had Maddie I would be so annoyed at those parents. Needless to say I was not looking forward to the flight. To our surprise Maddie did wonderful! No crying at all! We had such a great time when we got there. We got to see all of our friends and even got to meet the new baby in the group, little Richie! We also hit up Fenway and spent plenty of time relaxing at our beach house. The beach house was incredible. We went to sleep with the ocean waves rolling every night. It really was the perfect trip!
Maddie had so much fun with her nana out on the beach
This was our home for the week.. it looked like something straight out of a book
Little Richie and Maddie playing
Plymouth Rock
Weenie roast on the beach with papa and nana
Having fun with uncle j
Fenway!! Maddie was asleep in the stroller
When we got back from our vacation we had the pleasure of being photographed by Laurelu of Heart Photography- Staci Cole. You can visit her by clicking here. We had so much fun with her and the photo's turned out better than I could have ever imagined. These photo's mean so much to me because as most of you know with TSC you have no clue what each day, minute or second can hold. Staci captured her so well and we will always have these photo's to bring us back to this wonderful time in her life.
In July we had Madilyn's 3 month follow up for an EEG and Echo cardiogram. I had been so nervous and anxious for this appointment. Madilyn hasn't had a seizure since April 26th so I was hopeful that things would be good, but couldn't get the what-if's out of my head. Luckily I had my side-kick, Candice and her two year old, Mack to go with us. Chris was on an OT shift so they graciously joined me. After a long day of appointments the news was : Maddie's tumors on her heart were GONE! We were so thrilled by this news! And then to make it even better her EEG had greatly improved! She was still having some abnormal activity but NOTHING like it was in April. Her neuro was so pleased with her progress and couldn't believe how well she was developing. Mack and Maddie played during most of the day and Candice made the day so positive. It was a great day all in all!!
Maddie did so well with her EEG! Thank goodness :)
Mack and Maddie having fun in one of the many waiting rooms we waited in!
We also go to join Brent, Candice and Mack at the lake for a long weekend. We had such a good time being out in the sun and enjoyed the time away. Once again Mack and Maddie had a blast!
Candice and I grew up together as kids. It is so amazing getting to watch our children do the same! They are just like family to us!
Out on the boat!
The end of July brought my dreaded shoulder surgery... YUCK! Thankfully everything went well during surgery. I was in a lot of pain the few days after but have been feeling much better. We moved in with my parents to have the extra help. And boy has it been helpful. I will be in a sling for 4 more weeks. I'm pretty much useless when it comes to taking care of Maddie. It's really been tough having to sit back and watch others do my job. I'm just thankful that those who have helped have been so amazing. Maddie just loves being the center of attention!
Finally getting to hold me sweet baby!
Are you all still here?? I'm sure I've lost a couple of you by now ;) On to the finale.... We made our trip down to the Fort Worth are this past Monday. We were going to be visiting with a TS doctor and geneticist. The day started pretty bad. We had one problem and then another and another and so on.... We finally got on the road at 3 in the afternoon and arrived at our hotel around 8:30. Maddie did very well on the trip. I was more of a problem then she was ;) My shoulder was killing by the end of the drive. We woke up bright and early on Tuesday and headed to her appointment. The Cook Children's Medical Center was amazing! Everything was so high tech and all of the employees were so helpful! We first saw a geneticist who talked about our family history and explained to us what she will be looking for in all of our testings. They will first start with Maddie and then move onto Chris and I. I am very anxious to get this done so Chris and I know if either one of us have TSC as well. After that we saw her Neurologist. He was incredible! He explained sooooo much to us! First of all Maddie at this point only has tubers on her brain. She does not have any SEGA tumors. They are the ones that grow and can cause some major problems. They will continue to monitor her with yearly MRI's. They said if this does ever happen there are different options. There is surgery to remove the tumor and also a medicine to shrink them. The medicine is also used on renal cancer patients. So it would act like chemo. You don't lose your hair but it does kill down you immune system. And also it's a medicine that has to be taken for the rest of your life. If you stop them the tumors would grow back. But thankfully we don't have to worry about that for now. He was so pleased to see that she was doing so well with her meds and that we were weaning her off of one of them. He completely agreed with her treatments and told us that the Neurologist that we see in Tulsa is the best around. That gave us such confidence in her medical care! He also mentioned how impressed he was with her developmental skills. She is right on track with her skills and he said we are very lucky to have such a smart girl! We of course new that ;) We left feeling like we had gained so much knowledge about TSC and felt very encouraged by how well she is doing.
We also goy to visit with Chris' grandfather and grandmother while we were down! Our vidit was wonderful, just not nearly long enough. We can't wait to see them again!
I don't understand why God has put us in this situation but I do know that he hasn't left our side through all of this. We have been so blessed with amazing doctors and nurses. He has shown his love through others and there support for us. He has shown me what it means to love... We have learned to enjoy every second of our daughters life. We don't know what tomorrow holds for her, but we do know that we will never be left alone. He is there for us and what a great feeling that is!! We feel so blessed to have our daughter in this life with us. She brings so much joy and love into this world.
Well I guess I better stop before I get all teary eyed... Plus typing this with one hand has left my left hand almost numb!
Thank you all for staying with us on this journey. Please continue to pray for our family. We know that God is hearing and answering all of the prayers being sent up. Also, would you please share our facebook page? We would like to show others out there how God is touching and blessing our lives. We love you all!!
Chris, Heather and Madilyn
