October-December 2006

(latest updates are at the bottom)

November 13, 2006

I'm sorry that it's been soooo long since I've updated everyone on Ally.  I really appreciate everyone's thoughts, prayers and support. I tried to be brief in this update, but sorry it is so long.  There was just so much to tell! 

 
Ally is doing pretty good these days!  We have definitely had some ups and downs over the last month,but things are looking up.  I think there is a VERY good chance that she is on the real drug hydroxyurea for the CA clinical trial.  She is finishing a second month in the double-blind placebo stage where only the pharmacist knows if she has it or not.  4 more months of phase I and then in phase II, Ally gets the drug definitely!  The doses also increase throughout the study if her bloodwork comes back okay.  Ally has to give blood every two weeks. Our next trip to Stanford, CA is November 29 - December 1st.  For this visit, she will see Dr. Wang, have bloodwork and also a muscle test.  Hydroxyurea is not a cure, but we are hoping that it will keep Ally healthier and stronger.
 
Allyson is moving her arms much more and her grasp has gotten much stronger.  If on her side, she starts to lift her elbow towards her face.  I think she is trying to play "peek a boo," one of her favorite games.  Ally is also learning to press buttons on toys with assistance (some to make music and some to tell us what she wants to do).  The most amazing thing that is happening is that Ally is starting to sit up again with support. For the last two months, she has mostly needed to lay flat or her oxygen numbers would drop if she was upright at all.  She had also lost her gag reflex and seems to have it back a little. Most important is that she smiles and coos very often and her eyes light up the room. 
 
Ally has definitely turned into a Momma's Girl. She loves to be with Daddy, sisters and Grandma too, but she can give her nurses and therapists a hard time lately if she wants Mom.  I think that she has learned to work her machines too since if she gets upset, her oxygen numbers go down, the machine alarms and Mom comes very quickly.  She will fuss and fuss for others and then as soon as mom picks her up, everything is often okay.  Hopefully this will get a little better, but it is typical for any 9 month old baby.  We just have to be careful with Ally because of all of her respiratory concerns.  She continues to give us some scares once in awhile, but luckily they have all turned out okay. We are also in the process of tweaking her feeding process and diet since she has been having some trouble.  She eats through a g-tube in her stomach.
 
Other important things for Ally and our family:
- Allyson was a miniature flower girl for my friend Christie's wedding and was absolutely adorable in her white/pink dress and decorated stroller.  A special thanks to my mom for preparing her dress and the stroller.
 
- Kristyn had her cheerleading competition and did very well.  Unfortunately her team did not place so they will not be going to Florida, but she has many years ahead of her.  She had a SUPER first report card for 5th grade!
 
- Melissa is attending preschool 3 days a week and music (with Katie and Kiara) once a week.  She is singing and dancing more and more every day.
 
- Kristyn and Melissa were Spiderella for Halloween.  Allyson was the spider ; ) 
 
- We continue to have two nurses that help out 3-4 days a week. We may increase this soon, but the agency is looking for another nurse with a strong respiratory background and someone who can meet Allyson's needs.
 
- Billy celebrated his 33rd Birthday on November 5th!  He has been helping a ton with the girls and around the house.  I am so grateful for all that he is able to do after his long days at work. 
 
- I actually went out and did 2 Pampered Chef shows this month.  I need to try to get out more often, but I want and need to be there for Allyson.  If anyone happens to need any Pampered Chef items for holiday cooking or gifts, please go to my website or let me know.  I am trying to remain an active director with Pampered Chef, but the goals are a little hard to meet at this time in our lives.  I am doing catalog and online show for people and an occasional real show.  Fall is our most popular time of the year.
 
- The fundraiser for Ally is still in the process of being planned for February 3rd!  If you are interested in donating an item for the auction/raffle, attending, or helping, please contact my sister, Sandi at 847-587-8678 or slm721@prodigy.net
 
- Please keep the Spina family in your prayers. They are a wonderful family that lives close to us who lost their little 10 month old daughter to SMA in October.  My heart goes out to their family during this difficult time.
 
 
December 11, 2006
Allyson update 12-11-06 and FUNDRAISER FLYER
 

Hope everyone is doing well.  Overall things are going pretty well with Allyson.  We are having some eating and feeding issues, but hopefully we will resolve them soon.  She is having a gasteric emptying test this Wednesday at Childrens Hospital and I'm working on her diet.  We had our 4th trip to California for Ally's clinical trial November 29 - December 2nd and it went well.  We had to stay an extra day in CA due to the snow in Chicago, but Ally did wonderful wearing her bi-pap breathing machine on the plane.  She also reached and passed her 10 month birthday on 12-2-06.  Every day and month is a blessing.  I keep praying that she will make it through her first winter without being hospitalized for a serious illness or complication.  I hope this can really happen.  I'd love to make it through all the holidays. 

 
Ally's fundraiser is quickly approaching (less than 2 months away).  It will be held on Saturday, February 3rd (the day after her 1 year b-day).  If you are in the Chicago area, we would LOVE if you would join us for this evening.
 
On this site is the final fundraiser flyerPLEASE share this when everyone that you know and ask them to pass it along.
We are also selling raffle tickets that you may be interested in (even if you do not live in IL).  You do not have to be present to win.All the proceeds will go directly into the Angel Allyson Fund to help our family meet Ally's needs.  There is also a chance to make a small donation to Families of SMA and SMA Support who have helped me enormously with Allyson's diagnosis. 
 
Please let my sister or I know if you are interested in attending the fundraiser dinner, purchasing tickets, and/or selling tickets.  We are also still collecting donations for the silent auction and raffle.
 
Thanks again for all your support,
Tina

 

December 24, 2006 Ė Ally and Krajewski Family Update

The holidays are here and boy is it a busy time of the year.  On Thursday 12-21, we celebrated x-mas with my mom, sisters and their families.  Ally sat in her tumble form chair for about 2 hours while we ate and opened presents.  I'm so proud of overall how strong she has been.  She enjoyed seeing and playing with some new musical/lighted toys.  On Friday 12-22, Allyís godfather, Jimmy got married to a very sweet gal, Tiffany.  It was an AMAZING holiday themed wedding.  Kristyn was a junior bridesmaid and Melissa was the flower girl.  They had a special blessing for Allyson at the church.  At the reception, Santa came and Ally (and I) sat on his lap.  Iím so glad that all the girls got to see Santa this year.  On Saturday 12-23, we celebrated x-mas with my father and my sisters again.  Ally received some more special angel gifts.  We are beginning to collect angel things for her and our home.  Now, it is Sunday 12-24, and we will be celebrating x-mas with Billyís family.  I know I must sound crazy with all that we have been doing with Allyson at this busy, cold and germ-y time of the year, but I think it is very important for her to be around family and part of these special occasions.  I am trying to be careful with germs and we carry all her respiratory equipment along so we can do breathing treatments often.  Iím sure I will become more cautious over time, since many SMA families stay home in the winter, but I want life to be as ďnormalĒ as possible and Ally to feel everybodyís love around her.  I also want to share her special smile and special twinkle in her eyes with everyone.  On Monday 12-25, we will have a nice morning with just our immediate family.  Later in the day, the oldest girls (and maybe I) will visit my cousin Loriís house for the final x-mas celebration.

          Our next trip for Allyís clinical trial in CA will be January 4-6th.  Kristyn will be coming with us to learn about what Allyson does every month.  We did have to pay for her flight, but I think it will be a great experience.  Melissa will be staying with my sister Tammy.  All of our flights for Billy, myself, and Ally (flat on our laps) have thankfully been paid for by medical charities, but our trips are still very expensive with car rental, hotels, eating outÖ.  I canít wait until we hold the fundraiser for Allyson on February 3rd.  This will also be a 1 year birthday celebration for Allyson since her birthday is February 2nd. 

          Allyson had 2 major tests done at Childrenís Hospital in Chicago this month.  One was a gastric emptying and the other was a g-tube scan (x-ray) to try to find out why she is having some respiratory complications when eating.  Both tests came back completely normal, which is good, but we still donít know what is causing the complications.  We continue to tweak some of her medications and her feedings and I think it may be getting better. 

          As I mentioned earlier, Ally has really been doing pretty well with her strength.  She will sit (supported) for up to 2 hours at a time (if she is in the mood and is supervised).  She LOVES watching Teletubbies and doing sign language movements to Baby Singing Times.  We now have 3 great nurses who help to take care of Allyson M-F from about 7:30-5 while Billy is at work.  We also have some dinner shifts so that I can cook more often.  I am there too, but it is wonderful to have an extra set of hands and someone to help.  I can even run a few errands when our nurse, Nicole, is working since she has known Ally since August and has helped us through a few major breathing scares.  I try not to leave the house too often, but it is nice being able to get a few errands done here and there.  I was VERY fortunate to have my hair colored, cut and styled this week, thanks to a super nice friend Alisa who paid for it as my x-mas gift.  Itís getting too hard to travel to my friend Christieís salon in WI.  I need to continue to do small things for myself here and there because it can really lift your spirits.

          Another thing that has lifted my spirits lately is all the contact I have had with other SMA families online and on the phone.  Itís neat to be in contact with others who are experiencing the same things we are.  It also helps to learn from parents who have SMA children aged newborn-11 years old and even some adults with SMA who are beating the odds.  I have also been talking and helping (a little) some newer families to SMA.  Iím now the secretary of the IL chapter of Families of SMA and look forward to spreading awareness and support in the Chicago area.

Well Ė I better end another one of my long updatesÖ

Please be sure to visit Allysonís websites and also let myself or my sister know if you are interested in attending the Angel Allyson Fund Banquet on February 3rd or you would like to purchase or sell raffle tickets for a great prize or the 50/50 cash raffle.

            Thanks again for all your support!  Happy Holidays to you and your family!  

 

December 30, 2006 - Beginning of Pneumonia Episode

**This was a letter I emailed to Dr. Schroth, the pulmonlogist in Madison, WI to double check things I was doing to help Ally fight her slight case of pneumonia. Many of the responses are found in a 1-1-07 update.**

 

Hi Dr. Schroth,
I'm writing to see if you can share your thoughts on Ally and SMA care.
 
 Ally had a low fever 100.6 two days and then one day a high 102.  Tylenol and Motrin worked fine, but I brought her in to the pediatrician to check her ears and lungs on the fourth day.  By the fourth day (12/28) she did not have a fever and was more smiley and talkative, and breathing was actually better, but they did hear a little something in her lungs when listening on her back.  An x-ray was done and she has a slight case of pneumonia at the base of both lungs.  They didn't seem overly concerned, but wanted to be precautionary because of the SMA. Of course, I'm paranoid.
 
They prescribed omnicef antibiotic for 10 days and she has another appointment on Tuesday 1/2/07.  Is omnicef a good choice for SMA and are there any interactions with the hydroxyurea or previcid?  I know it says not to give 2 hours before or after iron (which is in her vitamin).   Can it be given at the same time as these or should I space them out? If needed, I'm willing to try something else.
 
She overall was doing way better yesterday, but today has much thicker mucus since we started the antibiotic.  She is also now in the low 90s for o2 on and off bi-pap.  I   Is this what it is suppose to do with the mucus breaking up, or could it possibly be getting worse. I increased her bi-pap to 17.4, but don't know if this is right or not and if I should try to increase more??  She's usually at 16/4.
 
We are going to do treatments (cpt, postural drainage, cough assist and suction) about every 2 hours or more if needed, and have her on bi-pap if she is low 90s too.  I used a saline bullet with the nebulizer and I did a deep suction with a small cathedar this morning, but don't know how often I should do deep suctions or neb treatments?  Should I be using albuterol or something else?
 
Should I be doing more or less?  Is 4 hours treatment enough if she is doing okay later, or stick to 2 hours?  Do I wake her and take her off bi-pap for treatments?
 
Does she need any other type of medicine such as benedryl for drying secretions, or cough medicine? She is trying to cough a little and I use the cough assist during these times. Do I only give tylenol if she has a fever or will it help with other things?
 
I asked the pediatrician (back up one)  if we should cancel our CA trip, and they thought she might be okay by next Thursday 1/4.  We have a follow up appointment with her regular pediatrician (who was off) on Tuesday.  Maybe it's smaller than my huge worry, but I want to be extra careful.
 
-----
For her g-button, it has come out of her stomach twice in the last two weeks with the balloon intake and with about 4 ccs in water.  It was only tugged on a little when I was putting her in her crib.  We saw a back-up peds surgeon (since Ally's is on vacation) and she said the hole looks okay overall and the area around it is just sore.  She didn't recommend increasing the size to 16 french (she has 14 fr and 1.0 cm), but gave me a script if I choose to do it.  She is worried the hole will just get bigger and it is already near her rib cage.  I decided to wait to increase to a 16 french, but don't know if I should try it now.  It seems rather loose right now.  She said to treat it with bacitracin and use the 2 by 2 pads.  Any thoughts on this?
 
Thanks in advance for any advice or thoughts you can offer,
Tina