Updates2009

September 2009 - 4 years, 10 months

*As of Sept 2009, Jenna's updates will be posted to www.jjsjourney.com Please visit us there!

Friday, September 4, 2009 - Jenna had a GREAT 1st day at school yesterday! She was SO excited to get on the bus and made a couple new friends in her class. From what I hear, she was wide-eyed when they took a walk down to the library! We all know how much she loves to read books! Due to our nursing situation, she had homebound instruction today. One of her special ed teachers came to the home for 1.5 hours and she did great. They worked on calendar, her name, sequencing, etc. We are also hoping to start using her computer more. There is so much potential on there for her, it would be great to get her using it. The web cam/satellite school is still being worked on. We are hoping it will be all set to go in the next couple of weeks. That should be nice too, so she can still interact and see the kids from her class when at home. Mya & Kali had a great 1st day too! They like their teachers and are excited about the new school year.

Thoughts and prayers going out to all the sick kiddos! Way too much sickness for so early in the year!

August 2009 - 4 years, 9 months

August 10, 2009 - Four years ago today, Jenna was diagnosed with SMA. She was given no hope, treatment, or cure. They said it was a matter of time due to this horrible degenerative neuromuscular disease. And here she is 4 years later. Here she is enrolling in Kindergarten. Here she is driving her power chair around the zoo. Here she is swimming in the backyard with her sisters. She has come so far. I am SO proud of our little angel as she continues to fight and beat the odds everyday. For such weak muscles, she is one strong girl!

So we are still getting ready for Kindergarten. Sounds like everything is in place for Jenna except for nursing on Mondays and Fridays. We just haven't had any luck finding one. So if anyone knows of a LPN who is available those days from 8-4 or 7-3, please let me know!!

And I wanted to thank all you for your support during the 6th Annual SMArt Walk for A Cure. We had approx 400 registrants and raised $45,000! You support means so much to us. Again, THANK YOU!!

July 2009 - 4 years, 8 months

July 28, 2009 - Lots going on as usual in the Boguhn household. Jenna's room is done! Yeah! We moved her stuff downstairs on Monday and she is lovin' it. We still need to organize it a bit and hang the decorations on the wall, but she is in.

Jenna is also using her power chair more and more. We are trying to make it her primary chair so she can attend Kindergarten in it. There are a few adjustments that have to be done to it though. Her joystick needs to be closer to her so we need to get the proper stuff to do that. We are also looking into a wheelchair mount for her Quick Glance system, seeing she will be using it at school too.

Our one nurse will be dropping Mondays and Fridays as she just got accepted to graduate school. She will still work weekend for us, but we need to replace her for the other days. A new nurse is suppose to be starting (and training) on Monday, so we'll see how that goes. Hopefully it will all work out fine. Let's keep are fingers crossed.

Jenna has been getting out this summer and having a great time. We attended the Walk for Independence (The Independence Foundation) and had a butterfly friend keeping her company. The thing sat on her hat for 10 minutes during the walk and also hung out on her finger. The kids just loved the butterflies as they just hung out w/ them. It was really cute. We also went bowling too. Jenna did great for the first hour then she had enough and wanted to take a "walk" around in her power chair. Great practice for her too.

Well the 6th Annual SMArt Walk for A Cure is this Saturday (August 1) at Beaver Island State Park on Grand Island. Registration starts at 9 am, walk begins at 10 am, and a picnic/basket raffle will follow. All are welcome! For more information, please visit WNY FSMA . Hope to see you there!

July 2, 2009 - Once again it has been awhile since my last update. Things have been pretty busy around here as we prepare Jenna for Kindergarten this fall. Lots of things to get in place. We are also in the process of building her 1st floor bedroom/bathroom. The build is almost complete and everyone is very excited.

Jenna is doing well on the liquid Albuterol. We did drop her dose down a bit as her HR was high. Once we dropped it down, her HR went down too. I think we just need to increase it slowly. While on it, her voice has become louder and stronger and all she does is talk now! It's pretty funny as we joke around that she is a motor mouth now. She has also been moving her legs a little more too. When I sit her up on my lap, she swings her legs. And she is also doing well tolerating her feeds and calories since coming off the VPA. Her calories are almost up to where they should be.

We tried to attend the SMA Conference in Cincinnati this year, but Mya ended up pretty sick and we had to head home. Good thing we did because Kali became sick that morning too. Both are doing fine now and thankfully Jenna did not catch it. A few families caught Swine Flu at the conference and one if hospitalized. Our thoughts and prayers go out to the families!

The SMA Walk for a Cure will be held on Saturday, August 1 at Beaver Island State Park at 10 am. All proceeds benefit research and support for SMA! For more information, please email me or visit our website at WNY FSMA. Hope to see you there!

May 2009 - 4 years, 6 months!

May 27, 2009 - Oh my goodness!! I cannot believe it has been a month since my last update! Wow, how time flys! So lots of stuff going on. We have started construction on Jenna's 1st floor bedroom and bathroom. It is coming along great and probably be only 4-6 weeks until complete.

We are also gearing up toward Jenna transitioning into CSE (Committee on Special Education) as she turns 5 in November - and starting Kindergarten! We actually have a meeting this week, next week, and the following week to try and get everything set up for summer services and services for the fall. The only thing that we feel (us as parents) we really need to work on is the nursing issue. We would like to keep our same nurses as they know Jenna and know how to take care of her. You would think this shouldn't be an issue, but unfortunately it is. Hopefully this can be worked out for Jenna's best interest.

Well today we started Jenna on liquid albuterol. We are hoping it will increase her SMN / mRNA protein levels and help increase her strength. There are side effects and we are hoping she will encounter none of them or at least very few! : )

The WNY Chapter of FSMA is preparing for our upcoming walk. It will be held on Saturday, August 1 at Beaver Island State Park. For more information, please email me or visit our chapter website at: www.wnyfsma.org

Thoughts and prayers going out to all the sick kiddos and those who are recovering from surgery. A couple of the kiddos are now recovering from trach surgery, pneumonia, and some just under the weather. Hugs and prayers to all of you!

April 2009 - 4 years, 5 months!

April 23, 2009 - Well it has been a pretty busy day. Yesterday it looked like Jenna may have had thrush so she went to the pediatrician this a.m. It isn't thrush, but nasal junk all in the back of her mouth. When she woke up, she had some nasty secretions too. The doctor put her on a Z-pack just in case while we wait for the 24 hour culture. Now she is running a 101 temp and HR 150 - 160. Poor thing!

On the good side, she also saw the cardiologist today and did well! They were able to get the measurements of her left ventricle, which was a problem last time due to the shape of her chest. Well all looked good! Yeah!! And now on Monday, she will be off to see the pulmonologist.

Last week we went to The Center for Courageous Kids Camp in Scottsville, KY. What a wonderful place! The kids had a great time and there was so much to do. They went horseback riding, bowling, arts and crafts, swimming, wood shop, and more. It was great to see the other kids as well.

Many prayers for all those who are sick!

April 12, 2009 - It has been over a month since my last update! I cannot believe that much time has past. Things have been going well. Jenna was sick for about 3 weeks back in February and all in all doing well since then. We have just been pretty busy and have so many things going on right now. We are getting ready to attend The Center for Courageous Kids camp in Scottsville, KY. The girls are so excited! We'll meet up w/ many other SMA families and it should be a lot of fun. We have also signed the contract to start Jenna's addition. This will be SO nice when completed. She will have her own bedroom and bathroom on the 1st floor. She really is getting so tall that you need to turn your body as you walk up the stairs w/ her so you don't bump her head! Such a big girl now!

February 21, 2009 - Jenna is doing much better. Over the last couple of days her HR has come down. Thanks to another family, Jenna has a new size Mic-Key button. They overnighted it to us and it is SO much better. Her irritated skin (from the leaking) on her tummy is already looking much better too!

Seeing Jenna is off the VPA, we are thinking of putting her on Liquid Albuterol to help increase her SMN 2 protein. First we need to have an EKG and ECHO done and we'll go from there. I am a little concerned it will raise her heart rate and difficulty sleeping (as the neb form did). From what I have heard though is if you go slow with getting her on the proper dose, it shouldn't be a problem.

After coming off the VPA, she lost some weight so we have been working on her diet to increase her calories. I am happy to say she is back to where she was! Yeah! Now we would like her to put on a couple more pounds and get her into the 20th percentile. That seems so weird to say as at one point she was up to the 75th! With this weight loss, a lot of her puffiness has gone down and her TLSO isn't fitting anymore (again!). So I have scheduled an appointment w/ the orthotist to come to the house and take a look at it. She will most likely need to be re-fitted for a new one.

I am also in the process of looking into Homebound Education and Satellite School. Jenna's IEP is coming up soon and she will be transferring to CSE (Committee of Special Education) as she will be turning 5 (Holy Cow!) and enrolling in Kindergarten. We are going to try to have her in school during the so-called healthy months and have her educated at home during Respiratory season. Hopefully we can get this set up as a simple cold has her laying flat continuously for approx 2 weeks. Wish us luck!

Sending many thoughts and prayers to all the sick kiddos and all those in the hospital!

February 18, 2009 - Well we had a record timing appointment in the surgery clinic today - which was GREAT b/c I tried to not even go in, but they made us. So the surgeon looked at Jenna's button and agreed w/ me that it was too big, leaking, and she needed a size smaller. He also agreed that we really don't need to come in and he was willing to write a script forthe measuring tool so I can resize her button at home. This is great news except he is leaving in April and who knows what the new Fellow will allow. Oh well, we'll cross that bridge when we come to it.

Jenna's HR has been high. It is jumping from 130 to 150+ (her normal is 105-112). I really am not sure what it is. She says nothing is hurting her, she doesn't have a fever, not really sure. Maybe her button is bothering her? Maybe. The surgeon didn't put a new one in b/c we get them from Home Care and I put them in. So I talked to the VNA and of course they don't have her size in stock and need to order. So..... she still has a button that is way too big and that is leaking. So if anyone has a size 14 fr, 1.5 cm Mic-Key button they don't want, please let me know!! : )

January 9, 2009 - Jenna's running a temp again today. Yesterday it started w/ 100.1 and then was fine for the rest of the day. She was quiet and acted pretty tired. This morning she woke up w/ a higher HR, 102.3 temp, and diminished air flow in her left lung. After her respiratory treatment, she sounded better. Motrin wore off this afternoon and her temp went back up to 102. Had another respiratory treatment, still sounded better than this morning and is now sleeping. I am hoping this doesn't turn into anything!

Hugs and prayers to all the sick kiddos, especially those in the hospital!