The girls had a nice Christmas. Jenna was able to go visiting so that was nice too. The previous week she missed out on as she was runnign a temp of 102 and had some junk in her lower lobes. She tolerated the antibiotic well and her temp came down. Well sort of. She continues to have an on again off again low grade. This actually has been going on since September. We thought it may be teething and a molar did pop thru. Her bottom gum is really swollen, so maybe it is teeth. We'll see.
Jenna received a Special Tomato Multi-Positional Seat from the Independence Foundation's Christmas Wish List Program. It is very nice for her. We will most likely be lending out her old chair to a family who needs it. Hopefully they will get as much use out of it as we did.
Prayers going out the all the sick kiddos. Especially those who are in the hospital.
Wishing you a very happy and HEALTHY New Year!
December 17, 2008 - So I spent the afternoon visiting 3 little friends in the PICU today. One has pneumonia, one is getting ready for trach surgery tomorrow, and one has been intubated for over a month and is thinking about a trach. Poor babies. I wish I could do something to make them better or heal quicker. My heart just goes out to them along w/ my thoughts and prayers.
Jenna is still trying to cut that molar. She is running low grade fevers 100.6, lots of secretions, and just very cranky. Other than that she is fine. She was unable to go to swim today and we canceled Special Ed too. We will also cancel swim for tomorrow. I hoping her fever breaks in time to spend Christmas w/ Grandma on Saturday, but I guess we'll see.
December 14, 2008 - Today
is a sad day. I have just learned another SMA child
(locally) has earned his wings at the age of 6 months. I
hate SMA. It robs these children, their parents, and their
family of such a precious life. It is just so unfair. My
heart, thoughts and prayers go out to the family.
Many thoughts and prayers Shira as well. She is in the PICU with RSV. Poor thing. RSV is so nasty. And such a terrible, terrible sickness for our already respiratory compromised children. Get well soon Shira!
There are so many other kiddos sick right now too: Logan H, Leah, Taylor, Logan P, you too MJ, and any others I may have missed. You all are in my thoughts and prayers.
All in all Jenna is doing ok. Her top molar finally broke thru. She had a few days of relief and now it seems like we are going thru it all over again. She is running a low grade fever, many secretions, trouble sleeping, upset tummy (yes, from teething too!). Poor thing. I can't wait until the two bottoms ones come thru and she will be all done for a couple years.
Well we are having great success with the Independence Foundation's Christmas Wish List for Special Needs Children. We have been able to grant almost all of the wishes except for the wheelchair accessible vans. We are still working on those. If anyone has a van they would like to donate, whether it is accessible or not, please let me know!
In case I don't get a chance to update before the holidays, I hope everyone has a very merry one being with family and friends. Happy Holidays!
December 5, 2008 - Sorry for the lack of updates lately. As usual, it has been pretty busy around here. And now with the Holidays here, even busier. Jenna seems like she is doing a little better. She has not had a fever all week (knock on wood!)! This is a great sign. I also did a Uristix just to see where she stands as she went off the VPA a month ago. Can you believe that her glucose came out normal!?! And that there was only a trace of protein?! Her ph is still off, but this is major improvements!! We are really happy that the kidney involvement is correcting itself being off the meds. Surprisingly, she has not lost any strength either. She is actually doing quite well. While sitting on my lap, she is now swinging her legs back and forth and that is just wonderful to see. In Aquatic Therapy the other day, she had 1 lb weights on her ankels and was still moving her legs in the water! That is just AWESOME!!
November 16, 2008 - Jenna has been fighting a cold for the past couple of weeks. She gets and on/off fever (which isn't difference from before the cold, heart rate goes up and down and tons of junk being suctioned out. It is really just in her head and throat and thankfully not in her chest. So we are managing. I started giving her Dimetapp, this past week and it is actually helping. The secretions aren't as thick and as much with taking it. So that is good.
So far we have not seen any improvements or weaknesses since taking Jenna off the VPA. After being off for 2 months, she will need repeat tests done to see if there are any improvements and then again at 4 months.
November 2, 2008- Happy Birthday to my sweet little princess! I cannot believe you are 4 years old today. I remember when the doctors told us to take you home and love you. I thought I would never see this day. You are a strong fighter and I am so very proud of you. Love you Babydoll and Happy Birthday!
October 16, 2008 - "knock on wood" Jenna's leg has healed and her foot is no longer bothering her. Hopefully she will be fracture free for a very long time now! We saw the Endocrinologist this week and she agrees w/ Dr. Swoboda on IV Therapy. Typically this is done in the hospital every 3-4 months. I explained that we will not start this until Spring due to respiratory season. It seems like every time Jenna is in the hospital, she ends up catching something. So she said that they were going to see if they could set it up at HOME! Wow! Wouldn't that be great?! They have never done that before so it may take a little while to set up, but that would be FANTASTIC! We would definitely do that.
September 2008 - 3 years, 10 months
September 11, 2008 - Just a quick update.... Jenna was discharged late yesterday and doing ok. She still need total bedside care and cannot be transferred or she coughs and chokes. So, it will be a few days in bed with many respiratory treatments and many DVDs and books to keep her company. Thanks again for all your thoughts and prayers.
September 9, 2008
- Today I sit here in the PICU at Children's Hospital
so very thankful my little Jenna is still with us. She
gave us a terrible
scare and left us for only a short littel time, but what
Jenna called out on Sunday evening around 11:30 pm. I went to her room and repositioned her like I usually do. I could see she had a lot of secretions she was trying to deal with so I tried to suction her. It didn't help so I took her bipap off to cough and suction her. This also didn't help.
Her heart rate began to rise then her o2 began to fall. The next how many minutes felt like the end of the world. Her sats continued to fall
and now so did her heart rate. I kept coughing and suctioning while Paul was on the phone with 911. Next I knew her o2 was at 24 and her HR at 51. Looked again and she zeroed out. Zero o2, zero heart rate. All I could do was continue to inflate her lungs and wait for EMS. Thankfully, the are fairly close to our house and are already familiar with Jenna. The paramedics bagged her with o2 and we got a number. It was only 24, but it was a number. At this time, while completely shaking, I got her bipap back on while EMS kept blowing o2 at her. Once her mask was on, we bled o2
thru her bappy. Her numbers were coming back up. We hooked up her machine to the o2, inverter and battery and I carried her down to the ambulance as the paramedics made sure her bipap and o2 stayed connected. She stabilized on the way to the hospital and did ok in the ER.
Today she is doing so much better, off of o2, and a couple periods off of her bipap. She is starting with some GI issues so we'll see how that
goes over the next 12+ hours.
I decided to tell her story with detail so maybe someone will learn something from it - whether it be something to do with Spinal Muscular Atrophy, about special needs, hospitalization, or just being thankful. I also want to thank all of you for your thoughts and prayers. They mean so much to us.
September 5, 2008 - It has been a crazy week (but when isn't it?)! The girls started school on Wednesday and love their new teachers. Jenna started Pre-K today and did GREAT! She sat up in her Special Tomato Chair for almost the entire time! The only time she was down was when the kids went outside to play on the playground and Jenna was getting her stretches and ROM done. She had a great time meeting her new friends and loved the crafts, games, and centers. She cannot wait to go back next week.
Happy Birthday to all the August kiddos: Charlie, Lily, Veronica, Mariah. Hope you all have a great day!
July 2008 - 3 years, 8 months
July 27, 2008 - Wow, have we been SO busy around here! We have been working so hard to get Jenna's appeal information into the insurance company in regards to a new power chair. She had to see a pediatric physiatrist on her "cognitive and physical ability to drive a power chair". We received the info from the physician and sent it on it's way. I do want to mention that on Jenna's cognitive exam, she scored as a 4 1/2 year old (she is only 3 1/2)! Way to go JJ! Also, we have been working on Jenna's MAW pool. It was postponed a couple times, but it finally was put up. Now we are waiting for the electrician/gas people to come in and do the wiring and the heater. We are also getting estimates on a deck to make it easier to get her in and out.
July 10, 2008 - Jenna is doing much better. She has finished her antibiotic and is no longer on Zantac (for the irritated stomach due to increased respiratory treatments). She did have a couple plugs yesterday, but is getting back up in her Kid Kart and power chair. She is also back into the swing of things as "summer school" started this week. Boy is she tired! We have (re)started the Intal nebulizer treatment for her asthma. It is a 3-4 x/day neb treatment, but hopefully it will help and she can get outside more often.
Jenna had her exam with the Rehab physician for her "cognitive and physical ability to drive a power chair" exam requested by the insurance company. Unfortunately she was sick, but we still went. The exam went well and the physician was so very nice and helpful. Now we are just waiting for the report so we can submit our appeal. Yep, they denied us because of her "physical and cognitive" ability. We will definately be fighting this one to the end as Jenna is growing out of her chair and won't have anything to sit in soon. It is unfortunate that we, as parents, have to fight so hard for everything our children need.
Jenna's Make-A-Wish was granted! She wished for "water" so her heated pool will be installed this weekend! How exciting! It was suppose to be installed early this week, but there was a snag in the plans, so this weekend it is. She is going to be so excited! She just loves the water and it is so nice to see her in it because she can move SO much more. Yesterday in Aquatic Therapy she was actually able to open up her arms real wide and then put them around me to give me a hug! It was fantastic!
Prayers going out to Sophia who is currently in the hospital. Get well soon!
June 2008 - 3 years, 7 months
June 23, 2008 - It has been a couple weeks since my last update and we have been pretty busy. I switched Jenna's Zyrtec to a full dose and given at night (it makes her groggy) so that is going well. All in all, Jenna is doing ok. Her allergist appointment was moved up to Wednesday so that is great! Hopefully he can find the right combination to help combat these allergies/asthma issues.
June 9, 2008 - Well, we are thinking that a lot of Jenna's issues are due to allergies. We have had the highest pollen count in the country over the last couple of months and I am sure this plays a big part with Jenna. Temps have been around 90 so we closed up the house and put the a/c on. Since doing this, Jenna has been much better with her secretions. She is starting to sit up for short periods of time again and doing fairly well. We have decided to take her to an allergist as Zyrtec just doesn’t seem to cut it. Unfortunately, her appointment isn't until July.
June 3, 2008 - All in all Jenna is doing fine. We are still having a lot of issues with her getting junky, despite what we are doing. I looked back at the calendar and it has been on and off for over 6 weeks now. For the past week and a half though, it has been worse. She is getting crackly sounding when she gets up in her chair or potty. So, unfortunately, she is down quite a bit these days. We have switched from Xopenex to Albuterol as that seems to work better, she is still on the Pulmicort, and we have added Nasonex. So far, nothing has changed.
May 2008 - 3 years, 6 months!
May 12, 2008 - May is half over and I have not updated yet! Well, Mya made her first communion and she looked just beautiful! She was very excited and I was so proud of her.
We had a new nurse start this month too and she is great. She is helpful and seems to know her stuff. She has a lot of respiratory background too, which is great. I really hope it works out as I can see her working with us for a long time.
April 2008 - 3 years, 5 months
April 24, 2008 - It has been an up-and-down week. Jenna ended up going back to the pediatrician on Monday because she wasn't quite right. It turns out she had a bunch of junk in her right lobe - probably from all that aspirating she did the week before. She was on a 5 day antibiotic, then off for a couple days before this was found. So... she went back on an antibiotic for the next 5 days. Her lungs sound so much better today and she hasn't really needed the Xopenex, so that is good!
We have a pretty busy weekend coming up. Our cousin is making her first communion and we have Mya's birthday on Sunday! Wow! 9 years old! I just can't believe it!
Our guestbook is finally fixed. We had lots of trouble with spam and it is now fixed! Please feel free to visit and leave a message!
I also wanted to say, "Welcome Home MJ!" I am so happy to hear you have FINALLY been discharged after 70+ days. You are such an inspiration!
April 15, 2008 - Maybe I spoke too soon... Jenna isn't feeling well. We believe she has been teething and she definitely has more oral secretions she has been trying to handle. Unfortunately she has been aspirating those secretions any time she gets herself upset. It has been 3 times in the past 36 hours. Well she is now running a high temp of 103.8, HR 150s, and RR 50-60 and is on bipap to help her breathing as she is laboring. I am waiting for the pulmo to call back and we will hopefully be starting an antibiotic real soon. And of course we are doing respiratory treatments regularly.
We are in need of a nurse for two days a week - 8 hour shifts. This can be thru an agency or thru Medicaid's Private Duty. Must be able to lift/transfer and I am willing to train on everything. If you know of anyone who may be interested, please pass this on along!
March 2008 - 3 years, 4 months
February 2008 - 3 years, 3 months
February 20, 2008 - So much for those few nights of sleeping! Jenna slept last night, which was the first since Thursday night. She would be up all night with only an hour or so sleep. She is still has quite a bit of secretions too and her diet hasn't changed at all either. We took her to the pediatrician yesterday and he said that both of her top molars are coming in and ready to pop thru. So we are guessing this is the reason for all the "illness". Hopefully. It truly is amazing on how teething effects our kids, like the whole swallowing aspect and how we have to protect their airway just because of a tooth. These are things you don't even think twice about in a healthy child.
February 16, 2008 - Jenna is doing better, not 100%, but much better. She is still dealing with a stuffy and runny nose, but that's about it. Yesterday was really the first day I was able to get her up without choking - so that's an accomplishment all in itself. We are still doing saline nebs as it really seems to help break up the sinus junk. Since she is feeling better, we will be trying to work on her diet again. She really hasn't made it back to full feeds since her surgery in December. At this point, she is still on Vivonex and water. Maybe we will try a few things this week and see how things go - maybe after a couple nights of good sleep as we all need it! : )
February 11, 2007 - So I guess it wasn't teething. Last week it started as a little runny nose and then Jenna ended up pretty sick this weekend. She had lots of thick yellow stuff, high HR/RR, 103 degree fever, and her chest sounded wet. She didn't sleep much either, poor thing. We had Cleocin here and started it right away and then touched base with the pulmo on call. She prescribed Zithromax instead, which is fine as I am more familiar with it. Any antibiotics effect Jenna's GI tract, so a lighter antibiotic (yes, can you believe Zithromax is "lighter" than Cleocin) is a good thing. And of course she is getting q4 respiratory treatments and lots of coughing in between. We are running feeds continuously so she gets more fluid to help her from getting dehydrated. She pretty much is on continuous to begin with, 20 hours per day, but now we bump it up to always unless coughing, etc. We have recently started using Xopenex instead of Albuterol. This worked great for Jenna. With a pulse rate of 150, Albuterol would put her at 170. Xopenex didn't raise her HR at all. She has been sleeping soundly since her 3 am treatment, so that is a good sign. Hopefully she is on the way down.
February 6, 2008 - HAPPY BIRTHDAY KALI! My Kali turns 7 today! WOW, I can't believe it! Can't wait to give you your present and enjoy some cake! I hope you have a wonderful day today! We love you!
Now for the Jenna news....
She is doing ok. She had a couple desats today when getting up in her potty chair that required respiratory treatments. It looks like she may be teething too, so maybe it is related to that? She still needs one top molar and one bottom one. Last night, she had her finger in her mouth quite a bit on the one side and she was MISERABLE yesterday. She learned to say "no" so that was the word of the day! It also could be a cold, not quite sure what to think. I have a bit of a runny nose today, so maybe that's it. It's no wonder considering it was close to 50 degrees yesterday and it is 30 today and is going to be 15 this week end. With all this up and down, it could all just be sinus too. This time I don't think it is diet as she has tolerated much since the last update.
We received some good news yesterday. Some of you may know this, but once we switched our insurance the first of the year, the new company denied Jenna the Synagis Vaccinations (RSV). We appealed this and so did her pediatrician. Well, the insurance company gave us a "final" denial. Paul brought this matter to his employers HR department and supplied all the same materials that went to the insurance company, saying why Jenna is a candidate and why. Well yesterday, it went to committee and, YEAH, they approved it! So now they go back to the insurance company and say they need to approve payment. That is GREAT news! We have been working on this since the beginning of January and all the hard work is finally paying off. It gets exhausting making all these phone calls, fighting, "proving" what kind of care Jenna needs. Well, it was worth it this time!
Another thing going on is that we are getting Jenna a wheelchair lift in our garage. We decided to go with the lift vs a ramp as it can be indoors (garage) and it can be removed if we happen to ever move. They are also widening our door from the garage to the house and the one to the kitchen. So it has been a little dusty this week, but it should be nice when it is done. We have been using a suitcase ramp onto our deck, but when it's icy and snowy, it is too hard to get her up and down, especially for 1 person.
I want to send my thoughts and prayers to all the sick kiddos and those going thru surgery as there are so many right now! We are sending big hugs and many thoughts and prayers!
Oh, and a very special Happy Birthday to Mr. Aiden too! : )
January 2008 - 3 years, 2 months
January 28, 2008 - Jenna must be coming down with something. She started with extra secretions yesterday and her sats dropped a couple times, even while laying down. They also dropped while sleeping last night so we had to wake her and do a full respiratory treatment - poor thing. We started q4 treatments with Albuterol, CPT, Cough Assist, Postural Drainage, etc to try and nip it before it turns into something serious.
For those of you following the GI saga... I added a 2.5 oz jar of Pears today and her cheeks started flushing after an hour of being on her feed. This is one of the symptoms she had before stripping her diet. Not sure if it is a coincidence, but I remade her formula without and we'll see if it goes away.
I am so shocked on how many kids have RSV this year. Many of them had the synagis shots too. What REALLY gets me is that most of these kids are on lockdown for the winter (like Jenna). So with that said, more prayers for little Miss Addy and now for Miss Sophia! You are in my thoughts and prayers!
January 24, 2008 - Jenna is still dealing with GI issues pretty much since surgery. We had to completely strip her diet down to just Vivonex and water. This did seem to help and she is sleeping much, much better since then. Her heart rate was jumping quite a bit, she didn't sleep for days and was pretty cranky. Today is the last day of plain formula and tomorrow we try the juice for 4 days. Unfortunately we will need to slowly add things back in to check for tolerance again.
January 18, 2008 - It has been a busy couple of weeks. Jenna transitioned from Early Intervention to CPSE as of the first of the year and some of her services have increased. She is now getting PT 2x/week, OT 2x/week, ST 3x/week, Aquatic Therapy 2x/week and a SEIT/Preschool Teacher 3x/week. Busy, busy, busy!
January 7, 2008 - I am happy to say that Jenna is doing much better. She still isn't on full feeds, but is doing much better. I don't think her stomach was able to handle feeds after working thru her ileus, so we just had to start over again. Right now she is on 3/4 strength and seems to be handling it fine. Just a couple more days of this and we will try full strength again.