Friday, February 27, 2009
Does Penny like the snake? I think that she does. Every time we take the snake out so that she can get used to us, Penny gets really excited and of course she wants to reach out and grab Sammy. I hope soon we will able to let Sammy's face get up really close to Penny's skin and we will see how that goes. Penny also loves to point at Sammy's tank and say "ah Da," when Penelope is getting changed.
How long is Sammy? It is tough to tell because she is always coiling, but my educated guess would be that she is close to a yard. Most milk snakes can grow up to 6 feet on average.
Does he eat lizards? This is a very astute question. Nathaniel was hoping that we could keep both Larry the Lizard and Sammy the Snake in the same tank. This thought has initiated many macabre conversations about the outcome of such living situations by me and Scott. We don't think that a snake as docile as Sammy would eat a lizard as large as Larry (a desert plaited lizard, medium sized). We feel that if the two reptiles had a showdown that Larry would win. Sammy does enjoy eating mice and we will be feeding HER one mouse a week. Scott hopes to get her to accept previously frozen mice that we can store in the freezer. I am not really excited about the warming up process but youu can't expect a girl to eat a cold mouse can you? I would rather go to the pet store weekly and buy a live one. We went to the store weekly for the crickets for Larry. And I guess the mouse is cheaper then 50 crickets too.
uggghhhhh...I'll stick with my dog and cat...lol Not really a question, but I will throw it out there that I am highly allergic to dogs and moderately allergic to cats. Scott and I owned a cat for a little while and we gave him away when I became pregnant with Penny so that I wouldn't have to take unnecessary medication while pregnant. We do miss Mack the Cat, but then we began to think about how much we enjoy our brand new living room furniture that we bought in his absence and we really don't want the new furniture all scratched up.
MO, when did you all decide to become CRAZY? You can thank Scott for that. He asked me today if I liked the snake. Although I do think she is very cute, I told him I kind of liked the $90 more than the snake, but we own her now so it is what it is.
Look for future posts about all the times Sammy escapes from her enclosure.
Thursday, February 26, 2009
Penny is ready to go at 6 AM. I don't think she knew quite what she was in for at this time.
I had to leave her behind after she was put under from the gas mask. It is never easy to leave her with strangers but the nurse made me feel so comfortable.
Wednesday, February 25, 2009
I was really blown away by the detail that the MRI showed. I can go through some of the things that Dr. S was looking at in this scan, because she was awesome enough to take Scott and I into a little room after the scan and walk us through the pictures. It was just really incredible. Since the scan is captured in three dimensions, there would often be 2 images on the screen. The images would be the same on both sides and then with a couple of mouse clicks to rotate the axis on one side, the other picture would coincide by bringing up the picture of a different cross view. Just really crazy stuff.
I was told by Dr. S that she checked out the size of Penny's right ventricle. One of the components of ToF is right ventricular hypertrophy. This is basically an enlargement of the muscle on the right ventricle. The reason for the enlargement is that this pumping chamber has to work so hard to get the blood where it needs to go if the pulmonary valve is defective or nonexistent,. When you work out a muscle it gets bigger, right? When Penelope had her repair surgery in December of 2007, the surgeon actually cut away some of the muscle tissue because it was getting a little out of control! Excess muscle tissue puts a strain on everything. It was a relief to know that the RV (right ventricle) was in fine shape because it means that the donor valve and conduit (donor artery or homograph) are working as they should be. There were no signs that her body was laying down calcium on the tissues. Also, the scan was able to measure the flow of the blood through the valve. Just amazing! It showed that the flow out of her RV was 20 ml per second (I am guessing second was the measurement of time here) and her back flow was barely over a ml. Some back flow is going to happen, I have been told. You just can't perfectly recreate God's system here. But 1 to 2 ml is something that anyone can live with.
This MRI scan was initiated because Dr. S could not get a good read on the condition of her branch pulomary arteries from the cardio echocardiograms. We were able to see in the images the large "patch" put in by the surgeon to funnel the blood out of her RV and into the donor valve. In a normal heart, the valve is partially inside the heart, like an exit door. From the valve, we could see the nicely sized conduit that was then connected to her branch pulmonary arteries. The arteries both measured a wonderful 7.3 cm or so. This is an ideal size for her and is actually close to the mean for children of her size. (well, compared to the data that has been collected). This was just wonderful news to hear!!! We do not have to go back to see Dr. S until November as long as there is nothing that concerns her from the scan. Dr. S still needs to take the time to review all the data she got from the imaging this morning, but she did not anticipate any surprises.
When Penny and I first got into the MRI department at 6:30, my baby girl was still pretty happy and sociable. We did have to wait until close to 8 am before I was able to take her into the receiving room. As I said previously, I had to quickly get her into her johnnies and then I was asked to follow the anesthesiologist into the imaging room. I had to sit her down on the bed and hold her while he put the gas mask on her face. After about one minute or so of her struggling to get the mask off, she had breathed enough of the gas to make her seem out. I know my daughter and I knew that she was not out just yet so I held onto her as the dr. turned away with the mask. When she began to talk again, he turned right back around and said "oh, I guess she isn't there yet!" So he masked her again and after another minute she was finally O-U-T. But she was so funny, even out like that, she managed to hold her leg up and then bring her foot close to her face. The 4 of us in the room thought that was soo cute.
A little after 10 am we were finally told that she was done and we would be able to see her "in a few minutes." About another twenty minutes later, we were told that it wouldn't be much longer now (I love how hospital time is so much longer than real time. 5 hospital minutes = 1 real time hour) As we were heading back to see her, following the sound of her cries, the anesthesiologist muttered something along the lines that they don't need that IV anymore anyway. As Scott and I looked to her wrist we noticed a good amount of blood. The bad baby that she is had pulled out the IV as soon as she could. But oh was she mad. I hate those scratchy cries from the dried out throat. They also needed to take peripheral blood pressures on all 4 extremities. This was a pretty impossible task considering her thrashing around and how upset she was, but the nurse did her best.
Soon I will post the few pictures I took of our event today. I am just so glad that it is done with!
Tuesday, February 24, 2009
For those of you that are new to Penelope's story, she has Tetralogy of Fallot with pulmonary atresia (atresia = missing), her pulmonary valve and a huge chunk of her pulmonary artery are absent. Some folks with ToF are put right after one or two surgeries because they have ToF with pulmonary stenosis (stenosis = narrow). Penelope's atresia is so pronounced that both of her branch pulmonary arteries are then stenotic and they might now be growing properly with the rest of her body. This MRI is going to determine the severity of the stenosis in those branch arteries. Then Dr. S can decide of some intervention prior to her next surgery may be necessary. Of course, no one is anticipating that she might need intervention because she is doing so exceptionally well. Boy, that Dr. Mello (the surgeon) sure did a great job on my baby's heart. He picked a donor artery that she could grow and wen it is time for her next surgery they will be most likely putting in a bovine valve, how crazy is that!
Well, I hope everyone says a little prayer for Penny tomorrow and send some good vibes so that we get some good news. While you are at it, please say a prayer for both Jax as well as Dillon because they are not feeling well. I am sure it is very hard on their mommies to see them sick.
Sunday, February 22, 2009
Monday, February 16, 2009
Penelope had a wonderful date with her boyfriend Dillon. He was a perfect gentleman to my little princess. I had a great time and enjoyed Melissa's good food and company.
Dillon had such a good time that he did not want us to even talk about leaving:
But we had to leave eventually to get the girl home and to bed. Don't worry Dillon we will see each other again really soon!
Wednesday, February 11, 2009
If you are tagged, you need to pass the award on to 10 other people. Here are the people that I have tagged:
1. Melissa at Having fun with Master Dillon
2. Renee at My Special K's
3, Erin at Adelynn's Journey
4. Cynthia at MeAnderings
5. Melanie at The Baeten Family
6. RK at Braska Bear
7. Tricia at Unringing The Bell
8. Cammie at The Heflin Family
9. Sarah at Class of 2008
10. Back to Lacey at Jaxon's Fight (I can do that right! ha ha)
Scott and I have that meeting tomorrow with Nathaniel's teachers and his principal. Thanks to the many people whose brain I picked, I feel that I have some good ideas to direct the conversation.
To end on a good side. Penny is just such a little joy. She now puts the sign for "more" together with "eat" when she wants to let us know that she is still hungry. I also had a conversation today with the RN for the cardiologist to discuss the real benefit for the MRI at this time. I guess the concern is that her branch pulmonary arteries are not growing to the proper size. From what I was told, the echo is mostly good for getting a picture inside the heart, but once you get to the peripheries the echo is not as reliable. So, if we wait for an echo in two months, we will most likely be at the crossroads and we will have to decide again what to do. I believe now that the best thing to do is to get the MRI done even though it will mean that Penny will have to go under general anesthesia and she will need to be intebated.
Friday, February 6, 2009
The struggle continues. I see such a bright child in front of me. We do a lot of reading; he writes grocery lists for me. We take library trips. He does cub scouts. But we got the letter today. The one that says your son is in very real danger of staying back a year because he is "substantially below proficient" in reading. I just don't see how this is possible. I know that he might not be at proficient at reading yet, maybe he is at the "slightly below" level. But do they honestly think that keeping him back will keep his interest and be beneficial in the long run? Why do they want 6 year olds reading chapter books anyway. CAN'T HE JUST LEARN AT HIS OWN PACE? The expectations set at this age are ridiculous and I am so upset over this my heart is in throat. I don't think we can fit any more reading into the day honestly. And I loved how the letter suggested that we do these things with him. Like they think that we don't interact with him at all.
Wednesday, February 4, 2009
Monday, February 2, 2009
Penelope has been receiving services through the East Hartford Birth to Three since she was was 6 weeks old. I remember those first few months, my heart and my head pulled in so many different directions with this beautiful new life. I had my 5 year old to worry about, the pumping and the trying to nurse routine (is there anything more frustrating than feeding your child?), twice weekly visiting nurse pulse-ox checks (Hi Meghan I am so glad we met!!), once a week visits to the pediatrician, and not to mention the round the clock medications she was on after her heart surgery. Somewhere we managed to squeeze in those early visits from our special ed teacher and our service coordinator, Marni from Bto3. Quickly, we added the phyisical therapy visits as well. I remember when the PT on the hospital staff stopped in to see Penny before she left the hospital for the first time and she mentioned that the average age for a child with Down syndrome to begin to walk was 2 years old. For some reason I was really blown away by that. As I looked down to the bed at that floppy little 7 lb baby, only 7 days out of surgery, I thought to myself, "Wow! How do I know if I am up to this challenge? I will have to work with her and push her so much just do accomplish something so basic as walking?" I will never really know if that physical therapist noticed the water welling up in my eyes for probably the, oh, fiftieth time in those past thirteen days, but she put her hand out and said firmly, "But she will walk." And I believed her. . .
In the past eighteen months we have seen our Birth to 3 physical therapist, Dr. Yvette, regularly about two times a month. If we really wanted to we could augment that to once a week, but as any one who knows Penny will attest, she is doing just fine with the status quo. It took Penelope a bit to learn how to sit up on her own. If someone came by and sat her up, she could stay there on her own for awhile by the time she was ten months old; the really neat trick came at about fourteen months when she was able to put her self in the sitting position. By this time she had also perfected her military crawl and would demonstrate this by transversing our downstairs floor plan on her belly in under 90 seconds time. This school year has gone by so fast it is tough to say when she finally crawled on her hands and knees full time, but I would guess that came around Halloween time. Now we are on to more challenging exercises to entice little Miss Penny pants to walk.
And through all of these incredible milestones, Dr. Yvette has been there to give support to not just Penny but the whole family. After she leaves, I sometimes wonder who benefits more from the visit, myself or Penelope. We are so blessed to have such a warm-hearted, intelligent person on our team, who truly wants to be here to support Penny and her family. We often talk about what I want out of life; and she listens to me! Dr. Yvette always gives wonderful advice on things we can do with and for Penny, but she gives it with such neutrality that it never seems dictated or scripted, but absolutely from the heart, what she knows to be right for our family. We are about half-way through our services with Bto3 and already I am looking to the time when Dr. Yvette will no longer be Penelope's instructor. Thankfully, I know that we will be able to continue a relationship with her, otherwise, I would really be dreading Penny's third Birthday. During our last visit on Friday, Dr. Yvette worked with Penny to help her walk while she was only holding onto one hand and we also worked on her climbing skills to get up and down off the big chair. And then she worked on my esteem skills to get me up and off my ass to look for something more fulfulling then to continue looking for something else within Enterprise. We talked a lot about me going back to school to get a Masters of Education. I always kind of steered toward becoming a high school mathematics teacher, and now I want to do this more than ever! If only everyone had a Dr. Yvette for their household!