Surprise!
I am so behind on doing an update; I can’t even remember when the last one was. I can tell you all that Savanna is doing great. 16 more days!!! All of you moms out there know what that means. 16 more days until school starts back! I am SO ready for her to go to school all day that I will probably be the only mom at kindergarten NOT crying when I drop off my child. I’ll try and wait to do my happy dance until I am out of eyesight of everyone! J I’ll be like, “I’ll see you at 3:00,” with a grin from ear to ear. She is so bored here at home and it is just too hot to take her to do anything during the day. Most of our outings are in the evening. Even swimming has to wait until about 9:00 at night so that Princess doesn’t burn.
I can’t believe how big our girl is getting. She was measured yesterday at the doctor and I was surprised she is only 43 pounds and 41 inches long. She feels like she weighs about 70 pounds. She saw her pulmonologist yesterday and she is very happy with how well she is doing and that her lungs look great. She saw her orthopedic surgeon last month and he is also thrilled with how well her back has done and that everything is still in place; nothing has come loose. He says we can wait at least another year before having to lengthen her rods again. Yea!!! Motor Mouth pretty much runs the house around here. She talks non-stop; so much so that I find myself asking her to play the “quiet game”. Can Mommy just have a few minutes of you not talking and asking me questions? It never lasts for long. In fact, we just got home about an hour ago and I was carrying her into her bedroom to get her ready for bed. Her ventilator was off, which means she can’t talk. Now don’t let her kid you. She can be off the ventilator for hours at a time, if she wants to. Normally we put her passie muir valve on that closes off her trach and it allows her to talk. She doesn’t like it because it interferes with her motor mouth. She has to push air up from her tummy to talk, which makes her speech a little choppier, so she doesn’t like to be off the vent for that reason. When she goes swimming, she wears her passie muir valve. Anyway, so tonight I am getting her ready for bed and I took her off her ventilator for a minute to get her changed and stuff. I decided I liked the peace and quiet so much that I would leave her off for a few minutes (I was right there with her the entire time) and teased her about how nice and quiet it was because she couldn’t talk. She would just smile as she waited for me to get done and put her vent back on. Once I did, she said, “Don’t do that ever again.” She didn’t like not being able to give me her 2 cents worth and bossing me around as I picked out a nightgown and did all of the usual bedtime stuff. Pretty sick, huh? My sense of humor has become warped.
I managed to finish summer school without killing anyone. That was a feat in itself. Anyone who ever decides that taking Microbiology in summer school is a good idea should have his or her head examined. I had to sit thru class (lab and lecture) for 5 hours a day, M-Th. Did I mention I hate sitting in class? I was disappointed that I finished with an 89.1 and the teacher would not give me the 4/10’s of a point to make it an A, but will have to be happy with a B. When I was about 3 weeks into my 6-week course, we were surprised (shocked actually) to discover that I am pregnant. Yep, preggers. Me! Most of you know that I don’t get pregnant easily. I had to take Clomid (fertility drugs) to get pregnant with Savanna. We tried again a few years ago and did finally get pregnant, but had a miscarriage in Dec of ’05. We pretty much decided after that, that if God wanted us to have more children, He would have to orchestrate the entire thing because I couldn’t go thru the emotional roller coaster of trying again. Then I started school and have just been busy with that. Now the only reason I was taking Microbiology in summer school was because it was the last science course that I needed to apply for nursing school. I wanted to take it in summer school so that I would be able to apply for the Jan nursing program, which the deadline to apply is September. Surprise!!! Guess I will have to put off nursing school for at least a semester now.
So, I am due February 21. I have passed the first trimester and felt that is was safe to share our news with the entire world. Savanna is thrilled. She had been praying for a baby brother or sister for a while. She LOVES babies and can’t wait for the baby to arrive. She says she will help change her diaper, feed her, read her books, sing her songs, put her clothes on, give her hugs and let’s not forget, put her lip gloss on. We hope she is not disappointed if she gets a baby brother instead of a baby sister. Otherwise I guess that baby boy will look really funny wearing pink lip-gloss! Okay, so now to answer a few questions that I know a lot of you are going to want to know and may not feel comfortable asking. 1) Yes, we have a chance of this baby having SMA; our chances are 25% each time we have a child. 2) No, we are not going to do any testing while I am pregnant to determine if this child has SMA; they would have to do an amniocentesis and finding out will not affect our having this child or help us “prepare” any better. We will have a blood test done as soon as the baby is born and should know within about 7-10 days if the baby has SMA. Of course we are praying that this child does not have SMA, but we also realize that is out of our hands. As a good friend of mine once said, you have a 25% chance of having a child with SMA, but you have a 100% chance of having the child that God wants for you to have. We will also harvest the cord blood, as I believe there is a good chance that could hold a potential cure for SMA. I did have a first trimester sequential screening done, because of my age. It is amazing that these old eggs got pregnant! Our chances of having a Down’s Syndrome child are 1 in 570 and our chance of having a child with Trisomy 18 is 1 in 10,000. Having the screening done brought our chances done significantly. Again, the outcome of the tests would not have altered the pregnancy in any way. I had to see the perinatologist because of my age and they suggest the first trimester screening which consisted of a sonogram and blood testing. I will see the specialist again at 16 weeks, but she said at my last appointment that she was very happy with how everything looked. I should not be considered high risk unless they find something abnormal at one of my appointments. Otherwise I am seeing my regular OB/GYN for the entire pregnancy and will deliver at Harris downtown.
Savanna did have a bronchoscopy in June. That is when they put a scope in her stoma (that is the hole in her neck where the trach is) and look at everything. A year ago she had some granulation tissue, but this time everything looked great. They just sedated her lightly for the procedure. She was supposed to already be “asleep” when I left the room, but she for some reason had some extremely high tolerance to the sleepy medicine and I had to leave the room while she was still awake. One of the hardest things I’ve had to do, leaving my daughter bawling her eyes out. They gave her Versed, which is supposed to make her forget everything. When I got to recovery to see her, she was already awake and crying because I was not there. She really put the guilt trip on me as she told a friend of mine that night, “Did you know that Momma left me all alone in the hospital today?” Stupid Versed! Didn’t make her forget anything did it?
I think I never sent an email to tell you all how great the rummage sale went. That was during the whole summer school, early pregnancy thing and I was doing good to keep my head attached and remember my name at that point. We did awesome; raised over $5,000. We sent a good chunk of it to FSMA and used the rest for some of Savanna’s expenses. We are going to Disneyworld Oct 21st for her Make a Wish Trip, which we are all thrilled about.
Savanna is now registered to play baseball with The Miracle League. It will be in Arlington and it is baseball for special needs kids. It does not matter what their disability is, they get to play. Savanna’s best friend, Delanie, will be her “buddy” which means she will help her swing the bat or do whatever Savanna might need help with. They can either hit the ball off a t-ball stand or have the coach pitch to them. Each inning, the last batter automatically gets a home run. We are so excited about her getting to play. We went out to the ballpark last year when they had the dedication ceremony. I was getting teary-eyed watching those kids play and see how happy they were to be involved in a team sport. Now being pregnant and watching my own child, I’m sure I’ll need a box of Kleenexes at each game! Her games will start Sept 29th and it is only a 6 game season, which we will be out of town for 2 of those weeks. Once I get a schedule, I will email it to all of you. She would love to have her own cheering section. The ballpark is right off Randol Mill Road.
I think that sums up the Rush happenings. I am attaching a few pictures. One is of Delanie at the rummage sale. She wanted to do something for Savanna, so she organized a lemonade stand and raised $275! She even designed t-shirts for her and Savanna to wear, which you will see in the picture. I forwarded the picture to FSMA and they wanted permission to use Delanie’s design for some kid t-shirts. Once we saw the shirts, we all had to have one. So mine says Cure SMA for my daughter. Only now I can’t wear it because my tummy sticks out too much. Some guy that we didn’t even know won the amazing grill that Elkins Hardware donated; I think he was an Elkins customer. But we made over $1,000 on that alone. Please keep the Coggin family in your prayers as they are approaching the 1-year angel day for Grace. They are expecting a baby boy around Thanksgiving and he is SMA free. As always, thank you for continuing to keep our family in your thoughts and prayers. I always feel so privileged to get to see what a blessing Savanna is to so many people. I know that she is going to be an amazing big sister and looks forward to the big day. Hope you all have a blessed week!
Love,
Mindy
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