Merry Christmas and Happy New Year

We hope that everyone had a great Holiday with their families, we were blessed to be able to be home this year. The weekend before Christmas Abby had her first out of town trip to Abilene, the drive was rough, but after 81/2 hours, 4 stops, and 1 ticket we finally made. Abby had a great time with all of her cousins, one of which she had never met. We got some great pictures, Nana even had someone come and take professional pictures at the house. Abby was the only one who smiled the entire time. Abby also got to make Christms cookies, and play with tupperware. I had no idea how long a cabinet full of tupperware could keep kids entertained. The drive home was much quicker, we stopped twice, and had no tickets thankfully. I had the week before Christmas off and spent some great quality time wiith Abby. I finally got to meet her physical therapist and thank her for all the progress Abby has made so far. I am almost positive we are on the verge of something big, whether its crawling, or walking I am not sure. She changes daily on whether she is wanting to stand and move or get on all fours and scoot. We spent the rest of the week getting things ready for Christmas, we even had some outings to Target and the mall. Grandma and I made a couple of batches of cookies which we delivered to our friends at the TCH CVICU, which is where we spent the last holiday season. We were so lucky to spend Christmas Eve at Hosanna with our church family, last year was a much Christmas different experience. We got some great pics of us at church, Abbys dress was sooooo cute. It was the only time I plan to spend that amount on a dress but we had to do it up big. She had the dress, the sweater, the tights, shoes, and a matching bow. When we got home daddy got to help the neighbor play Santa and then he read The Night Before Christmas. Once Abby was all snuggled in bed, we got her gifts arranged around the tree. She has become quite the gift opening pro(when she wants to). Christmas morning was great, we enjoyed Cinnabon cinnamon rolls and enjoyed the time together. That night we went to grandmas for dinner and Abby got to play with her cousins James, Michelle, and DJ. All kids had a great time opening all the goodies from grandma, Abby got the coolest zebra striped Tee Pee with a big pink heart. VERY FANCY!! We spent the next couple days keeping Abby indoors because Monday we have to be at TCH at 6:30am so that Abby can get tubes in her ears. Not a moment to soon either, she started pulling on her ear and getting very fussy this evening. I promise to update to let everyone know how it goes. I am told by everyone that it is an in and out 10-15 minute procedure. I am keeping my fingers crossed! I hope you guys enjoy the homework, Love to all~Mindy

Just a few pics<3

Just another Week

This week was another week of Doctor appointments, we met with the highly reccomended Dr. Duncan (ENT) on Tuesday, he told us like we had expected that she needs tubes. We will be going Dec. 28th to TCH for what should be a 20 minute in and out procedure, they told us that even cardio kids are home an hour later eating regularly and playing like normal. They did another hearing test and said that the fluid in her ear is slightly affecting her hearing, but she did have good responses so they don't feel there is any permanent hearing loss. She did not like them playing with her ears but she did a great job. Thursday we met with Neurology and Pulmonology. Neurology went so much better than I was anticipating, I was afraid he would be critical or not acknowledge the progress that she had made. However he went on and on about how amazing he thought she was doing. He said she has shown some very measurable progress and he was so proud of her. Unfortunatly he was double booked and he had to bounce back and fourth between us and a much more critical patient so we did a ton of waiting. He did bring in somethings that he wanted to watch her play with. She did everything he wanted her to do, rang a bell, pulled pegs out of a peg board, put blocks in a cup and took them out, found blocks that he hid under the cup, followed his puppet with her eyes, grabbed a ring and pulled it out of his hands, then grabbed the string that was attached to the ring, picked up a crayon, held a phone to her ear, and the list goes on. She was having so much fun! Next we rushed over to Pulmonology, who was a new doctor for Abby. She was great, she had even read over Abbys past health info to have a better idea of Abby. She changed Abbys inhaled steroid and also prescribed Singulair which seems to be upsetting her stomach. We have decided to hold off on the singulair until we get her off her current antibiotic and afrin. I just think we were adding and changing to much at one time. We are very happy to have also met with Ms. Rosemary, she is a private occupational therapist who is going to be working with Abby 2 to 3 times a week. She was excited to see the skills that Abby has, and help set some goals. We were also very excited to see a special treat this week, Houston got snow. I didn't get a chance to play in the snow with Abby, but our neighborhood did do a breakfast with Santa where they brought in snow and let the kiddos get pics in the snow. Abby didn't seem to mind the cold, wet snow, she even smiled a little. Her cheeks were so red and her nose looked like Rudolph. I finally got all the pictures that I needed for her Christmas cards, hopefully those will go out soon. I find myself always thinking back to where we were at this time last year and being thankful for the friends we made while at TCH. Love to all~Mindy

Thanksgiving

We were so blessed this year to be able to spend Thanksgiving at home, to bad Abby wouldn't try some of the good food. My mom went to Michigan for the week and left us to cook dinner, I am so glad she went, I know she has had a great time. This was our first time to prepare Thanksgiving all by ourselves. We invited my brother, and his family over and we all had a great time. Josh fried the turkey, and I prepared the additional goodies. I even made my first pumpkin pie, my husband said it passed his test. After dinner we had a great time watching and helping the kiddos play hide and seek in the living room, I think we were having more fun than they were. We came up with some pretty clever spots! I just can't get over the difference a year has made in our lives, last year I was thankful for bi-pap breaks, this was the point where we thought Abby was making a turn for the better. They had gotten her off the vent and was on bi-pap, her face looked so cute with her little blue mask. We also had Abbys greatgrandparents down from MI and they helped mom to prepare an amazing meal which we enjoyed in the TCH cafeteria. This year we were thankful for family and friends and their unconditional support. We spent the day swinging in the yard, getting Christmas decorations together, and just enjoying being together. Love to all~Mindy

What a week!!

I have been lough ucky enough to have the week off for Thanksgiving. I tried my hardest to get all of Abby's appointments scheduled so that I could limit my time off work. Monday we went in for a radio cystogram to test whether or not she was still having renal reflux. Our hope was that she didn't and we would be able to stop the antibiotic that we have been on since birth. This unfortuneatly was not the case, she still has the same amount of reflux. The test for this was pretty tough on Abby, they had to cath her and fill her blatter. My thought was how was I possibly going to keep her still, they had the answer, they taped her to the table. Sad but clever, I took pictures to show how everything went down. The good news was after the test we were able to meet "G"Grandma Trish for lunch. Abby enjoyed spending time with her, tossing chips on the floor, and laughing. We even got to do a little shopping afterwards, and Abby loves to shop, she would take one of everything if she could. Tuesday we had meeting with Speech and Nutrition. We were excited to find out that Abby will begin with a private speech therapist next week, we are hoping she can solve the Abby eating mystery. Nutrition said she is right on track with the number of calories she should be getting, if we could get some real food calories instead of this pediasure. We are now going through 5 bottles of pediasure a day, we are ready for her to get over her gag reflex with food. Wednesday we had the big appt, Cardiology. She was beginning to show signs of a cold but overall he said he was very pleased. He said to expect a rough couple of months with the weather changes and flu and rsv season. I told him we were used to living like hermits and we would be fine. Abby had this week off from Physical Therapy with Ms. Pat but mommy has been working her like crazy. We can almost say that she is standing on her own. We plan to rest and relax these next couple of days, mainly because Abby has become a sick chick, coughing up a lung, and not wanting to eat. She does seem to be handling things on her own for now though. Love to all~Mindy

Fanacy Nancy Day at Borders Books

Today we had a Fancy time at Borders book store, they were celebrating the release of Fancy Nancy's Splendiferous Christmas. They had a story teller, color sheets, hot cocoa and brownies, and a fun parade. After the bookstore we went walking around Market street in the Woodlands. We had a great time and got some great pictures. We found lots of stores that once Abby get a little older we are going to certainly love. Abby cousin Michelle went with us and we all had a great time. Hope everyone is having a great weekend, love to all~Mindy

Abby and Lexie

We were lucky enough to get to spend a few days with Stephanie and Lexie about five weeks ago. She was in Houston finishing up lab work that was needed to get her on the transplant list. We had such a great watching the girls roll around on the floor, laugh, and hold hands. Lexie was and always will be Abbys friend, and now her Saint. Saint Lexie will always live on in our hearts. Unfortuneatly Lexie got her angel wings October 23, 2009. This is something I couldn't understand. All along, Abby and Lexie were said to be so much alike, compared in so many ways. I know these are the things you can never ask, things that will never be answered. I am greatful everyday for the gift of Abby in our life. She has taught us so much, not only about the heart, but about what comes from the heart. We have been forever blessed to walk this walk, fight this fight, and love as much as we have loved. The day Lexie passed away was also the one year aniversary of Abby's second open heart surgery. This was the start to days where we didn't know what to expect, days where we had no answers, and lots of questions, days when we didn't know ourself what the next day might bring. Every time I look at pictures from our many stays at the hospital I am reminded of how amazing things are. I know we are blessed, I know we are being watched over, I know we have no control of whats to come. All we can do is be the best we can be and hope that it's enough. Love to all~Mindy

Worlds worst blogger...

Wow, I don't know if I can even attempt to catch yall up on everything that has been going on. Most importantly, Abby is doing great! Well lets start with the weekend after Abby's birthday, I had plans to clean out my classroom and get things ready for the new year and Abby decided she would like to spend the weekend at the hospital with a viral infection. Following this she had a great summer, attended an ECI play group where her lungs got a great workout, she wouldnt let anyone hold her and we ended up leaving early every week. This was supposed to help prepare us for day care, she did get into the daycare that we had originally chosen and we were so excited. The weekend before she was supposed to start, she began with the congestion, runny nose, and cough. I was supposed to be preparring to start the new school year, however, again Abby had other plans. After multiple doctor appointments, xrays, and meds they determined that she had pneumonia and was able to overcome with an antibiotic. We kept her home from daycare for an extra two weeks because we didnt want her starting with an already compromised immune system. However, daycare didn't last long for us, Abby was steadily losing weight and could not get rid of her cold, which would bring on our next problem~ear infections. Since August Abby has had a consistent ear infection. We will be seeing an ENT in December to arrange for tubes. We will also be seeing a pulmanoligist to possibly get on something for allergies. We have switched to a new pediatrician because her doctor did not accept medicaid and thankfully now we have medicaid to help with all of these appointments. Her new ped has her seeing seven different specialist so I almost feel like it would be better to tell the school what days I can be there instead of what days I need off. We have actually not seen Cardiology since June, we will see them the day before Thanksgiving, so greatful that someone is working that week. I mentioned that the daycare didn't last long, we hired a nanny to watch Abby. Things were going great until the day she decided to not show up, apparently she had gotten another job and didnt know how to tell us. Now she is with Dales girlfriend and they are doing great. Abby is continuing with her physical therapy, she has it three days a week and is making great strides. Eating is still our biggest challenge, we are knocking out the bottles but still not into solids. We had to say a sad good bye to Abby's good friends Lexie, I have some amazing pictures of the two cuties playing just two weeks before Lexie got sick. We were so looking forward to spending time with their family while they were in town waiting for a heart transplant. We continue to stay in touch with Lexie family and feel truly blessed to have them in our lives. Halloween was great, Abby buzzed around in her bee costume. She loved chewing on her honey pot and playing with her wings. Last night we had to have our 4 year old Doberman~Hemi, put to sleep. It was a hard decision to make but it was the best thing for him. Abby had a nurse start on Monday, with the MDCP~medicaid she is supposed to get weekly nursing hours. Tuesday around 9:30 they called to say the nurse had to resign from the job. Abby really is very low maintenance, I just can't understand why you wouldnt want to spend a few hours a day with her. Alright, I think I have gotten y'all as caught up as I can. I will try to do better with updating now that we have our computer up and going. Love to all~Mindy