Kaitlin's Journey

Feeding Tube Awareness Week

2012-02-06T11:05:00.005-05:00

This week is Feeding Tube Awareness Week. Please take only a minute to share Kaitlin's story with your friends and do your best to explain why her feeding tube is needed and the benefits it has given her. I truly believe that if I didn't make the decision to have the surgery, Kaitlin wouldn't be here with us today. She was very weak and starving herself because of the severity of her reflux. Kaitlin now has a gastromony tube placed with a fundoplication. She is now fed 99% through her tube to avoid aspiration and having the fundoplication means that Kaitlin doesn't have to suffer the pain of her acid reflux any longer. Kaitlin's reflux was caused by her weakened throat muscles and the lack of tone in her neck and throat. Since May 9, 2011, Kaitlin has gained a healthy 21+ lbs and is now happier and healthier than before. Thank you to our "tubie" for taking my daughter's weak 30 lb body and making her strong and healthy again!!! This is a picture of Kaitlin with her puppy who Mommy gave a tubie just like her! She loves her tubie puppy!

2012-01-12T01:11:00.002-05:00

Back at Urgent Care the other day just to get follow up x-rays done on Kaitlin's lungs to see how she is clearing up. Well, if you know us personally, then you know that NOTHING seems to go as planned! We are in the waiting room prepared for about a half hour visit. About five minutes into our wait, Kaitlin began having facial twitches; different than her "normal" twitching, I knew that she was going to have a seizure. The receptionist called nursing and we were brought in the back where I gave her Diastat; her rectal anti-convulsant. I don't like using this because I hate that she has to have so much medication as it is. Unfortunately, we have to play the hand we were dealt and the meds are a must in order to survive.

After some discussion and observation, we were finally allowed to go get her x-ray; the purpose for our visit! I usually have good dealings with the people at Wilton Medical Arts, but the technician that was there that night was horrific. If I didn't have Kaitlin, there would have been some choice words. She started off basically rolling her eyes at Kaitlin because she couldn't stand up for a chest x-ray! I told her that she can't stand and that we do it sitting. She was so nasty and said "What?! Did she fall or something?!" Question. If the problem was a fall, do you think we'd be there for chest x-rays to follow up pneumonia? NO. She then fought me on how the x-ray would be shot. I am the one who asked for the follow up. I know what I want. Her PCP and I discussed that we'd like it shot in the same position to compare it to the ones she had done a few weeks earlier. Why this is a difficult thing to do, I'm not sure. Eventually we got it done the way we wanted and then she proceeded to explain to me how she knows that having the flu is hard on kids and often drains them so they can't do "simple" things like stand-while laying Kaitlin's bed back down. Seriously? Did you even read the chart. Kaitlin doesnt have the flu. She can't do that "simple" thing you were just talking about! I felt very emotionally drained by the time I got out of there with Kaitlin. I'm so glad that all I needed that woman for was to push a button on a machine and then roll K back down the hall.

X-rays came back with her right lung clearing, but her left lung is not inflating all the way now. No more antibiotics, but continued chest percussions, suctioning and periodic oxygen. The good part about it all is how sweet Kaitlin is and how strong. She smiled even after her seizure, which I'm sure wiped her out. She was still laughing at mommy being silly and was very patient.

2012-01-09T21:57:00.003-05:00

Unfortunately, Kaitlin got aspiration pneumonia the week before Christmas. I took her to the ER on Dec 20 and we were sent home because x-rays showed clear lungs, even though I knew something was coming. I brought her back two days later and we were admitted to Saratoga Hospital on Dec 22. We were quickly transported to Albany Med after more blood tests and x-rays confirmed the seriousness of Kaitlin's condition. There we were admitted through the ER to the pediatric ICU. During the first few days there, we were faced with very hard choices. With Donny by my side, we stood strong by Kaitlin and fought with her. We were within 30 minutes of having to intubate her at one point, and that was the scariest thing we've had to deal with in a long time. Having Kaitlin in the hospital was hard to begin with, but then when the high flow didn't work, and then their second attempt with the CPAP didn't work, and the third attempt to assist her breathing with the BIPAP didnt work, the only other choice was to intubate her with a breathing tube. We asked for some time and that 30 minutes given to us soon turned to an hour and then two. Kaitlin was so strong and made us very proud. After she supported herself while on BIPAP for more than two days, she was brought down to the high flow and then eventually was allowed to get off assistance completely to see how she would do on her own. Again, we were made so so proud of the princess as she kicked butt. The doctors actually said that she made such an awesome recovery and they weren't prepared for it to be that easy. They had the breathing machine right outside of our room waiting for Kaitlin. She must have been listening and decided to show them just how tough she really is because the way she turned things around was truly amazing. We were allowed to come home the night of Christmas, which was truly something special for us. Donny, Kaitlin and I tried to make the best of what we could while in the pediatric ICU for those 3-4 days but we were so thankful that we could come home and spend the remainder of our Christmas together at home. Kaitlin is still struggling with the pneumonia, but is slowly getting better. She is off of her antibiotic, which gave her horrible wretching spells and massive diarreah, and we are going back in the morning for repeat x-rays to take a look at her lungs and see where we stand. I'm afraid that we might need deep suctioning to get rid of the congestion; more than what I can do at home. She is sleeping an awful lot, but is getting some smiles back a little more every day.

Santa visited Kaitlin in the hospital and gave her a whole bag full of toys! They filled her hospital bed and surrounded her. She woke right up when I told her that Santa was there to see her with presents! It was a very nice surprise.

On another note, the Post Star named an article about Kaitlin's battles as one of the most memorable of 2011 in their last issue of the year. It is nice to see that her word is getting out and people are responding to this journey that we are on. Kaitlin truly is the strongest person that I know and I am honored to be her mommy.

An Early Christmas Gift!

2011-12-18T22:10:00.002-05:00

http://www.medicalnewstoday.com/releases/237056.php#.Tu6gMZMdIBt.facebook

This is an article on research efforts being conducted on NCL and the waste management issues that children affected by NCL face. This is very exciting and I wanted to share it with you all. Please know that the donations that we receive not only go to provide Kaitlin with equipment and much needed assistive devices, but also a percentage of donations received go directly to research efforts in hopes of finding a treatment and cure for this childhood killer.

'tis the season

2011-12-12T22:34:00.003-05:00

Things are going pretty good for us right now. Kaitlin has been enjoying the lights and all of the Christmas activites the past few weeks. This is a nice time of year for us. Kaitlin has been upgraded to a big girl tree for her room this year! She loves it. Lollipop ornaments, little ducks and even My Little Pony's adorn her tree. It is truly a tree for a princess! This year I am putting together a third tree for the house with pictures hanging from it of Kaitlin and other children with LINCL. The tree is beautiful and I will post a picture soon. I have added a picture to this post of the tree in Kaitlin's room that sits at her bedside. We have had a visit from Santa which Kaitlin absolutely LOVED. He walked up to her and she sat right up and reached for him so fast that she even knocked his glasses off! She has always had a love for hugging Santa and this year was no different.

We recently went and got family pictures done of Kaitlin, Donny and myself; they always make great memories for us to hold dear. Keep your eyes open for more Kaitlin events, as we have some ideas in the works!

Fall Festivities

2011-11-15T10:12:00.002-05:00

Kaitlin has been having a pretty good fall. We enjoyed apple picking, going to the pumpkin patch and carving them at home. She really like to dip her feet in the "guts" of the pumpkin that I put into a bowl! We kept saying "Squish!" Halloween, Kaitlin and her cousin Haylei dressed up as bugs together. Haylei was a lady bug and Kaitlin was a bumble bee! Very cute.We have been struggling a little bit the past week or so with a few seizures. The last one was Saturday afternoon and wiped Kaitlin out through last night. She had a slow start this morning for her speech therapy but eventually woke up enough to hold her book while reading with Shaina.

Kaitlin was invited to a bowling birthday party this past weekend and really enjoyed herself! She had a pretty good score too! Then played with Donny in the ball spit and on the slide. Things seem to be settling down a bit and hopefully we will be seizure free for a few weeks. (We seem to be on a 20 day schedule, except for this past week with 2). Neuro appt this Thursday so we will delve into the seizures a little more while there as well.

Kaitlin's Journey Video

2011-10-17T00:19:00.002-04:00

Take a look at this video that I made about Kaitlin's fight with NCL and please feel free to share it with your friends. I'm still editing it though, so it may change here and there.

2011-10-17T00:03:00.000-04:00

Getting Ready for Fall

2011-10-16T23:54:00.003-04:00

Apple picking, trips to the pumpkin patch and fall clothes shopping has been filling up our days. While Kaitlin cant hold and eat an apple anymore, she really enjoyed sucking and nibbling on my apple at the orchard. She is doing very well right now overall. It had been about 2o days since her last seizure up until the one that she had last week. She has been very sleepy since then but besides spending a lot of time under the covers, Kaitlin is being her happy, silly self. I've made a video that I will post on here as soon as I can translate it to a format that the blog accepts. If we are friends on facebook, you can see it on my page in the meantime. Kaitlin and I hope that everyone is doing well as the chilly weather approaches and enjoy your Halloween! Kaitlin is going as a snow princess!

Someone is growing up!

2011-10-03T09:36:00.003-04:00

October 1, 2011 marks the date that Kaitlin lost her first tooth!!! It was loose for about 8 months or so and was ready to go this past Saturday. Kaitlin was sleeping on my lap when I noticed how loose it was. My sister Teri did the extraction while Kaitlin slept and I was an emotional mess. Thankfully we got it on video so I will have it forever, along with that tooth. The tooth fairy came and left Kaitlin $1 and must have known that I wanted to keep her tooth so she left it for us!

Our thanks!

2011-09-04T17:45:00.003-04:00

Kaitlin and I would like to thank everyone who came out and/or contributed to our 3rd annual Coming Together for Kaitlin benefit this past weekend. It was very nice to see everyone, once again, come together and support Kaitlin and our efforts to raise awareness for Late Infantile Neuronal Ceroid Lipofuscinosis.

In the past week, we have had a lot of appointments for Kaitlin. Kaitlin had a visit to her neurologist, pediatric surgeon and her opthamologist to name a few. We got a new button for her gtube inserted that is said to be more comfortable and help to reduce both granulation tissue and drainage from the tube site. It seems to be working well. The eye doc said that her vision has changed, but not drastically. We were happy to hear that! Kaitlin was rushed in for an emergency EEG on Tuesday to get a better idea of where her seizure activity lays at this point. I was happy to hear that some of the jerking and absentness we have been witnessing with Kaitlin is not seizure activity. It seems to be just an increases in her myoclonus and unfortunately a general progression of the disease. While I'm saddened to hear that she is progressing in some ways, I'm still happy to hear that she is not in a constant state of seizing.

On a happier note, keep an eye out for some new merchandise we will be posting. We have Come Together for Kaitlin t-shirts (Men's, Woman's and Kids) and Chamilia beads that were designed specially for Kaitlin from a jeweler in Connecticut and are beautiful. They have an engraving on the side that says "Together for Kaitlin". The beads are pink, purple and black. I will post pictures of all soon with their pricing and as always, the proceeds benefit Come Together for Kaitlin.

Come Together for Kaitlin

2011-08-21T20:16:00.002-04:00

We are looking forward to this weekend when we are holding our 3rd Annual Come Together for Kaitlin benefit in Saratoga. All are welcome! Events kick off at noon and there will be live music, raffles, buffet and silent auction as well as children's activities. So bring your whole family and enjoy this Saturday with your family while celebrating and supporting a good cause. Auction items include Rookie Derek Jeter card, Autographed items including a harmonica from John Popper of Blues Traveler and many others from Toby Keith and Tedd Nugent. Hotel stays and romantic getaways are also up for grabs! Come join in the cause and Help Us Help Her!

2011-08-17T23:52:00.002-04:00

Our summer is going much too fast! Kaitlin and I are enjoying every minute of our summertime together. Most of you know, but Kaitlin had her feeding tube surgery in May of this year and has since gained over 14 much needed pounds! The weight has been life changing for her. She is happy again and much more active. On the other hand, we are having a difficult time getting a hold on her seizure activity. Kaitlin is averaging a grand mal just about every 3-5 days which is not like her. We never had this much activity prior to the surgery. Could have something to do with the trauma of the gtube, or it could just be a progression of her disease. We are having some sleepless nights, difficulty controlling emotions and some new twitching and muscle spasms, but as usual, Kaitlin ends it all with a smile and a giggle for her mama. We had some bloodwork done earlier this week and have an appt with her neuro coming up. I have a lot of questions and points of concern to address, so hopefully we will have some answers soon and be on the right track.

They just keep on comin'

2011-08-07T19:15:00.003-04:00

Kaitlin just cannot get a break. Today, yet another seizure. That is 2 in 5 days. She slept for 6 hrs after the seizure and is no waking and very emotional. My poor angel. I've talked with her doctors to discuss why this could be happening, but unfortunately it could very well just be the mark of a progression :-( On a good note, Kaitlin did some great walking yesterday and got to laugh with her Hay Hay over at Gramma and Grandpa's!

Kaitlin turns 6 yrs old!

2011-08-03T00:49:00.003-04:00

So today started off as a great day snuggling in bed with my love. Unfortunately, while we were getting ready to go out for a little birthday shopping and ice cream, Kaitlin had a seizure. A very large, very intense seizure. Not even on her birthday can Kaitlin get a break. Damn you NCL, damn you. Kaitlin slept for about 5 hrs after this one. Tonight she was very cranky and it was hard to get her comfortable but after a little one on one time with mommy, she quieted down and fell asleep. I'm using my free time tonight to get some of her files in order and also do some additional research on NCL. I found some good stuff and am now heading to bed to once again, put my arms around that angel and drift off to sleep.

Check Up

2011-07-31T22:18:00.003-04:00

Kaitlin had her 6 yr old physical this week and was measured at 47 inches and 46.4 lbs! She is such a healthy girl now! Much happier overall and gaining back some of her functions. She went from no standing or taking steps at all to WANTING to do so. She is doing great, with full assistance of course, but the point is that she wants to do it and is putting a lot of energy and effort into it! She is doing so great. On the negative side, she is still having seizures, her most recent was this past Sunday. Not sure why she is having them, but we are keeping close contact with her doctors and will hopefully fix the problem soon.

Kaitlin is wearing her AFO braces every day and they are def helping her control her posture. She even is strong enough to go in her walker again! That hasn't happened in almost a yr. She scooted around the living room which was a huge feat for her. Mommy is so proud! She even pulled herself up into a sitting position from laying down which is amazing for her! We still have on and off days, good and bad ones. But Kaitlin seems much stronger and healthier with the added weight. Good choice on my part :-)

Up and up she goes!

2011-06-27T01:07:00.002-04:00

Kaitlin is now 40.4 lbs and looks great. She has started saying a few words again and has much more energy than she did before her surgery. This past week was Kaitlin's first week back to school and she did amazing. Kaitlin did great in her aquatic therapy and really enjoyed being back. We went and got pedicures this past weekend and Kaitlin got a nice massage. She always loves it and relaxes so much she almost always falls asleep. We still arent eating solid foods, but started on baby food along with pudding, apple sauce and ice cream of coarse! She just doesnt seem to be interested in solids.

Good News

2011-06-14T22:08:00.003-04:00

Today marks one week since Kaitlin's last seizure. I never thought I would say that. Kaitlin had such good seizure control until recently. I am sad to say that Kaitlin had 6 seizures in 11 days but happy to say that last Tuesday was the last time she had one. Last Wednesday we went to her neuro and he upped her meds a little and started her on melatonin for a sleep aide as well. Since then, she has been in very good condition. Kaitlin is much happier which is a relief because she went through a period of a few weeks when she was very upset and hard to calm. The melatonin relaxes her and allows for a good night's sleep again. Her g-tube site is doing very well and she has gained over 5 lbs since the surgery! She has officially reached her pre-weightloss weight and surpassed it! Yay Kaitlin!

Bumps in the Road

2011-06-03T16:01:00.002-04:00

We are hoping for a great turn out tomorrow for Kaitlin's Walk and looking forward to seeing everyone. This week has been difficult for Kaitlin. She didnt sleep well and was very emotional. Saturday morning Kaitlin had a grand mal seizure lasting approx 3 mins. She fell asleep right after and the rest of that day was either sleeping or crying and jerking. Sunday she quieted down a bit and was mostly back to baseline on Monday. Unfortunatly, Kaitlin had another seizure today at noon and then yet another at 2pm. This is very out of character for her. I called her docs and they said to administer diastat(a rectal anti-convulsant). I did so and she stopped the jerking that always seems to follow her seizures. Kaitlin is resting again and we hope to be happy and alert for the walk tomorrow.

On a better note, we went to the surgeon this week and got her mic key changed out for a bigger one. Since surgery Kaitlin has gained 5.2 lbs back from the 6 that she lost. She still has a way to go until I'm happy with her weight, but I think she is off to a great start!

Amazing Kids

2011-05-20T23:44:00.002-04:00

Tonight, a local family brightened mine and Kaitlin's lives a little more. Sydney and Chloe, two little girls who have recently learned about Kaitlin and her journey, came to me with a surprise. They have taken things into their own hands! The girls handed me a sandwich bag with money in it that they raised for Kaitlin themselves with a stand they created. What special princesses. Because they won't be able to come to A Walk for Kaitlin, they wanted to help out in their own way. I am touched by their selflessness and their want to better someone else's life. Kaitlin and I are truly blessed for having met this family and will always remember how someone so small can do something so big. Sydney and Chloe, thank you from the bottom of our hearts. You are truly special little girls!

Recovery

2011-05-16T22:30:00.003-04:00

After 5 long days in the hospital with some ups and downs, Kaitlin is home safe and sound. She is happy to be home and seems to be doing very well. I'd say she has some pain/discomfort but overall things are great. Weighing in the day of surgery at 32 lbs, the decision to do the surgery was clearly the right one. A mere 5 days later, Kaitlin is weighed again and has gained 2.8 lbs! A small feat but an important one. We now have nursing coming into the house a couple times a week to check on Kaitlin and see how she is healing and help me out with things. Kaitlin has a follow up appt this week with the surgeon to see how she is healing and what our next steps are. As of now, Kaitlin is out of school and therapies for about 2 weeks, and we'll re-determine that at this upcoming appt. Cleaning the site of the mic key button does give her some discomfort, but she is such a fighter and a tough little girl that she doesnt give me too much of a hard time. Such a good girl. I'm sure that there will be much more to come in the next few weeks. This picture was taken Sunday afternoon when Kaitlin and her Hay Hay were reunited for the first time after surgery!

G-Tube and Nissen Surgery

2011-05-09T23:57:00.003-04:00

Kaitlin went in today for surgery to get a g-tube and nissen placed. She began to lose weight in March and got down to 32 lbs. According to the Center for Disease Prevention, that puts Kaitlin lower than the 1st percentile for where she should be. The surgery went well. It took about half hour longer than expected because her stomach was smaller than the docs had anticipated and they had to make an additional incision to get it where it needed to be. She was breathing well on her own and was able to get the breathing tube taken out soon after surgery. We are in the hospital at Albany Med and will be here for at least a few days. Kaitlin seems to be in good spirits; she is on constant pain meds, but Donny and I managed to get a few smiles out of her this evening! I got to hold her for the first time about 7 hrs after surgery and it was like holding her for the first time again. I'm very nervous but am going to attempt to lay with her and get some rest.

Obstacles

2011-05-08T15:59:00.004-04:00

Tomorrow morning, Kaitlin goes in for surgery for a g-tube and nissen. I'm worried and nervous, but I know that it is the right thing to do. We'll be in the hospital for a few days and then back home to relax and recooperate together. I'll keep updating the site so stay tuned! And hopefully soon, Kaitlin will be much healthier and stronger! Plus, another upside is that she will never have to take these yucky meds again! I keep telling her, only a few more baby, and I know she is counting down the time until the meds can go through the tube and she doesnt have to deal with that aspect anymore.

Its Finally Spring!

2011-05-02T22:40:00.002-04:00

We've been waiting for what seems like forever to get some nice weather and finally it seems to be coming! Kaitlin and I are enjoying walks outside together and even some time on her swing in the back yard! She has been in very good spirits lately. Recently, Kaitlin has had some really bad nights where she hasnt been able to go to sleep for hrs at a time. Luckily, I think we are finally back to normal. She has had almost a week of good sleep and it was much needed for both of us. I took this picture the other day about a minute after she woke up. She is so silly when she gets a good nights sleep :-) Kaitlin had a great day at school today and then came home and just passed out after having a little snack.

Make sure to spread the word about A Walk for Kaitlin taking place at the Battelfield on June 4th at 9am. It's free to participate and to enjoy a BBQ after. Donations will be accepted. We are also having a Yankee Candle fundraiser during the month of May so if you'd like a booklet to collect orders or just order for yourself, email me at mooshoo_07@yahoo.com. 40% of the sales go directly to Coming Together for Kaitlin.

Unfortunately, we do have some not so good news also. Kaitlin has been having some tests done lately and is showing that she is asperating when she drinks and also has severe reflux issues. This is more than likely the reason why she has stopped eating much. She is going to need a G-Tube and will also get a fundoplication at the same time to help prevent any further reflux issues. Hopefully after it is placed and Kaitlin recovers, she'll regain her appetite and want to eat again. I'm happy to say that this tube will not take the place of food, but just ensure that on the days Kaitlin doesnt eat much, she is still getting her nourishment and calories her little body needs to grow strong.

2011-04-28T22:28:00.002-04:00

This is the news video that just aired about the fight I've been going through for years for child support and justice for Kaitlin. Check it out! We changed the law in NY State!

Happy Easter Everyone!

2011-04-24T17:52:00.003-04:00

Today is not only Easter, but it marks the two year anniversary of Kaitlin's diagnosis with Batten Disease. Two years ago today, Kaitlin had an appt at Albany Med. I thought it was another routine appt where they would take even more blood to test for more possible answers to explain her epilepsy. Little did I know, this day would forever alter our lives. Kaitlin's doctor sat me down, called in a social worker and assigned her to our case. I thought this was just procedure. Well, a few minutes after that, he told me that Kaitlin had the horrible disease that only months before he told me not to worry about because it was so rare. I dont remember anything from that appt other than him telling me she will not live past 10 yrs old and that there was nothing I could do about it. Kaitlin stood on my lap, playing with the teddy bear picture on the wall above us. She wiped my tears over and over and said "I ok Mommy. I ok." She was trying to hard to comfort me. She didn't understand the gravity of what was going on inside of her. Neither did I. I came home from the appt and collapsed in the bed next to her. I called my mom and she came over, only to learn the news herself. I remember laying in a ball, and crying. For hours. Days. I just couldn't understand what this all meant. How could someone so sweet and perfect, have such a horrible fate? Why? I soon learned there was no answer to these questions.

Since then, I've tried to make the best of everyday and enjoy every second with my sweet daughter, who I truly believe is an angel sent to me here on Earth. She has changed my life in ways I could have never foreseen. My life is better and more meaningful because of her. Kaitlin fights for her life everyday, as do I. I will never stop searching for that illusive answer to our prayers that no one has yet found. I will never stop. She is my life and my reason. The past two years have brought many changes to our lives, but has only brought us closer as mother and daughter and best friends. While Kaitlin can no longer sit or stand on her own, she cannot walk or feed herself, and has lost almost all of her words, she is still a happy and loving little girl and a fighter for sure.

Check out NoahOnTheRun on youtube. He posted a video for Kaitlin today. He is wearing her shirt today and dedicating the miles he runs today to Kaitlin! You can also find him on facebook: noah coughlin. He is running across the country for Batten Disease to raise money and awareness!

Happy Easter everyone. Cherish your babies, its true that you never know what will happen.

My Sweet Angel

2011-04-10T21:32:00.002-04:00

While in good spirits, Kaitlin is having a difficult time with some times. She has lost over 3 lbs in less than a month and isn't eating like she used to. We have an appt this coming week at the GI specialist to get their opinion on her condition and if she needs a tube now or not. We also have another EEG this week because of her increased seizure activity lately.

On the other hand, Kaitlin is doing FANTASTIC in her stander! She loves to stand up in the living room and watch Dora or Little Einsteins. She is doing great and is in her stander about 3 hrs a day. She is so strong and makes her mommy so proud! I took Kaitlin and my neice Haylei for pedicures this weekend also and Kaitlin was so relaxed that she slept the whole time!

We are officially on facebook!

2011-04-05T20:56:00.003-04:00

Go to facebook.com and search Come Together for Kaitlin. Thanks to the recent inquiries about us coming to facebook, we have officially joined! You can Like our page and share it with your friends!

Upcoming Events

2011-04-05T18:20:00.002-04:00

As most of you know, we are having a Walk for Kaitlin on June 4th. I wanted to let everyone know ahead of time that we are holding a fundraiser for Yankee Candle products the month of May. 40% of sales goes directly to Coming Together for Kaitlin to help fund research efforts and provide Kaitlin with the equipment she needs as she progresses. We recently purchased a stander to ensure that Kaitlin is bearing weight on her legs which will keep her bones strong and growing. She loves it! Just know that your donations go towards helping to provide all of these items for Kaitlin and we deeply appreciate all the help we can get! In addition to the candle fundraiser, we will have a variety of chocolate bars for sale at Kaitlin's upcoming events, as well as here on the website. The bars will be $1 ea and will be available at both the 3rd annual Come Together for Kaitlin benefit in August and the Walk for Kaitlin in June.

Walk Update!! Important!

2011-03-31T18:26:00.002-04:00

Important update! A Walk for Kaitlin has NO REGISTRATION fee! Bring your whole family down to walk. If you want to be a walker and would like a sponsor sheet, email me and I will get one to you. You can ask your family and friends to pledge you or just come and enjoy the day of fun and the BBQ afterwards. Also we are selling raffle tickets for beautiful baskets and prizes!

Updates

2011-03-29T00:28:00.002-04:00

Kaitlin has been doing pretty well. She had a little bout of the flu and was throwing up for a day and a half, but has since recovered and is back to her giggly self. We have determined that the Walk for Kaitlin is going to be a $10 registration fee and also there are sponsor sheets that walkers can take around to their family and friends for additional donations. If you are interested in a sponsor sheet or want more information, please contact me via this account or my personal email. Other than that, we had a great visit with another Batten family that we have grown very close to. They have two young boys who both have NCL and this is a picture of Kaitin with their oldest son, Drew, who is almost 7. She just loved him and cant wait to see him again! Kaitlin had to be everywhere he was, just snuggling with him and holding hands! So cute!

Settings

2011-03-25T23:42:00.002-04:00

In order to post comments on the site from now on, you have to be a member of Kaitlin's blog; meaning you have to be a follower. I apologize for the inconvenience, but there is someone commenting on Kaitlin's postings and the link they post as goes to spam. Also its hard to understand their posts. So you are all welcome to post comments to the blog but you now have to be a follower. Thanks for understanding and working with us during these changes.

Saratoga.com

2011-03-24T01:08:00.003-04:00

A wonderful writer for saratoga.com took interest in Kaitlin and her story and wrote a wonderful article that will run as a highlight on their website. The link is http://www.saratoga.com/news/nonprofits/kaitlin.cfm so copy and pasta that into your browser if you cant directly click on it through this post. Come Together for Kaitlin will be a featured local non-profit for all of the Saratoga area to see! All of her events from now on will also be listed on Saratoga.com under the events tab and charities/fundraisers. We are very excited about branching out more and more and look forward to whats to come! Remember to spread the word about Batten Disease because the more people who know about it, the closer we are to finding a cure!

Help Us Help Her.

2011-03-23T15:18:00.002-04:00

Kaitlin has been having a really good time at her swim therapy lately, along with very positive results with her strength from working at home. She is still putting out her best efforts to walk as much as she can while being assisted and is in high spirits. Not too much has been going on with us other than our "normal" day to day activities. Kaitlin and I are waiting for the approval for some new adaptive equipment for her which always seems to take a long time but is also very exciting to us that she will soon have more things that help her function every day. We are looking forward to the Walk for Kaitlin that is planned for June 4th (see previous post). We have also been working with a few waiver programs that Kaitlin is enrolled in for some home modifications that will make life a little easier for us both. Also make sure you are following Noah's Run at www.BattenJourney.com. Noah is running across the country from CA to FL and is doing it all to increase awareness and funding for Batten Disease.

Walk For Kaitlin

2011-03-14T15:44:00.001-04:00

The walk will take place at the Saratoga BattleField. It is scheduled to begin at 9 am on June 4th! For more information or to register or sponsor a walker, contact Kim Wilbur at 956-3516, Kathy Tripp at 507-6114 or Dotti Kozersky at 223-3613.

CoRDS Registry

2011-03-09T01:04:00.002-05:00

We are always searching for ways to expand our searches for treatment and research and we have recently made a huge leap. CoRDS Registry is a registry located at Sanford Research Center in South Dakota. They specialize in Lysosomal Storage Diseases and that is exactly what Batten Disease is! They are coordinating research on many different diseases but are now focusing their efforts on Batten Disease! Fantastic! This is what we need! All the work that we do to get Kaitlin's story out there and those like her, is exactly for this.
The more people involved means the better the chance that we find someone(s) interested in funding research efforts that potentially leads to treatment options and a possible cure down the road. Dr. David Pearce and Dr. Chun-Hung Chan are supervising the efforts at the Sanford facilities that are establishing the database of those affected by Batten Disease. As stated on their website, "By establishing a central registry of persons with a confirmed diagnosis of any rare disease, we hope to accelerate research by providing a resource for the identification and recruitment of potential research subjects".

Fantastic Night!

2011-03-06T01:01:00.002-05:00

Last night at 7pm was the start of the 34th annual South High Marathon Dance. This year Kaitlin was chosen as one of the recipients! We went out last night for the kick off of the 28 hr dance! It was great! So much energy and fun. Kaitlin had a great time last night and an even better time tonight! As we walked in through the crowd of about 800 dancers, Kaitlin had the BIGGEST smile on her face that I've ever seen! It was like she knew this was about people like her. She was raising her arms and sat up nice and tall in my arms. Throughout the closing ceremony, Kaitlin was standing and walking around the floor where the dancers sat in front of us. They played our video expressing our thanks and telling about Kaitlin's story, along with those of the other recipients so that the dancers could see exactly what they just did all this hard work for. Looking out over these highschool students and seeing all of their tears was truly amazing. They get it. And they care. These kids make a real difference in people's lives. Every year they somehow outdue themselves from the previous year. Last year, these amazing students raised over $284,000 for the chosen recipients. This year, unbelieveably, they STILL beat their previous years total! This year they raised over $326,000! Its times like these, when you really see the good around you. Kaitlin and I want to say a HUGE thank you to the dancers and all who helped them in their journey to make this years dance so fantastic! This means the world to us and we can only imagine what is next to come for all of these amazing kids! You truly make the world a better place! Thank you from the bottom of my heart.

Batten Journey...

2011-03-03T23:13:00.003-05:00

National Rare Disease Day was this past Monday, Feb. 28th. This year, we weren't only celebrating the day for awareness of rare diseases like Batten Disease, we were celebrating the beginning of a long journey. Noah Coughlan, a guy from northern California, took off on his 4 month journey across the country. Noah is running to raise funds and awareness for Batten Disease. He grew up with two young girls affected by juvenille batten disease, a different form than what Kaitlin has, but still the "same" disease. Noah will run an average of 20 miles per day until he travels from the Pacific Ocean Front of San Diego to the ocean side of Jacksonville, FL. Thats approx 2400 miles! Amazing. We are all blessed to have such a determined person in our corner helping to fight for a cure! Please follow his site as well as Kaitlin's...www.battenjourney.com or follow him on facebook! You can donate here on Kaitlin's site, or donate directly to Noah's cause on his site or BDSRA.org.

Home Again, Home Again...

2011-02-28T23:37:00.002-05:00

Today was a fantastic day! Not only did Kaitlin come home from her visitation with J, but she also had her first swallow study and she did great! They said there is no indication of her asperating and that by changing her foods a little and cutting things the way we are is exactly what should be done to take the first step. I was so so happy to get that news! I've been crossing my fingers ever since her pnemounia last month that she wasnt asperating. Can't tell you the relief I feel to know that my gut feeling telling me she is still feeding very well was RIGHT!

Sleeping next to Kaitlin tonight is going to feel so perfec, I've been waiting for this! Back to school for K tomorrow and aquatic therapy. She loves swim and mommy got her two new bathing suits to try out! Yay!

Spotlight News: Coming together for Kaitlin

2011-02-23T12:50:00.000-05:00

Spotlight News: Coming together for Kaitlin

This is the latest article written about Kaitlin, you can pick it up in the spotlight news tomorrow on news stands.

Pasta Pane

2011-02-20T22:07:00.003-05:00

We had a great night at Pasta Pane! I was told it was the largest turnout they've had! A few waiters stopped to tell me that they had to call in more staff because it was so busy! The night was great, Kaitlin ate like a little piggy and was full of smiles. She even walked a few laps around the restaurant which was amazing to see on its own! Thanks to everyone who came out and joined us for this amazing night. Thanks to the staff of Pasta Pane for hosting the event! Can't wait to see the final numbers!

Human Tribe Project

2011-02-17T01:14:00.000-05:00

Human Tribe Project

Spread this site around. You can donate fifteen dollars to Kaitlin when you join her tribe and purchase a twenty dollar tribe tag necklace. Check it out. Necklace only ends up costing you five dollars considering the fifteen goes to k. If you can't get a necklace just join our tribe! Tell your friends to tell theirs! Let's get Kaitlin the most followers on the site!

Kaitlin is such an inspiration!

2011-02-08T22:50:00.003-05:00

Saturday night, Feb 5th, Kaitlin was sitting on my sisters lap in the living room. She scooted off and held Teri's hands. I was in awe of how wonderful she was doing! Standing straight up and making mommy so proud of her! Then, without warning, she took off! Kaitlin walked around the house with a huge smile on her face. It was amazing to see that she was just as proud of herself as I was! Sunday afternoon, I was walking Kaitlin around and Donny came up behind us and said, "I'm gonna get you!" We used to do this all the time. Kaitlin immediately took off running as fast as she could(which wasnt very fast, but she thought it was!). She was screaming and so excited by the chase! To be able to hold her hands and walk again is the best feeling in the world! I am so proud of my angel dove. Let's see what comes of this new development! Hopefully we can hold onto it as long as possible!

Upcoming Events

2011-01-30T22:53:00.002-05:00

Kaitlin and I would LOVE to let everyone know that a local restaurant has chosen to donate a night just to her! Pasta Pane in Clifton Park will host an event for Kaitlin on February 20th. The event starts at 4pm and 30% of your check will be donated directly to Kaitlin's organization, Coming Together for Kaitlin. Pasta Pane chooses one nonprofit each month to feature at their restaurant and raise money and awareness for their cause. Please join us for a night of fun for all! Pasta Pane is located at 18 Park Ave in Clifton Park.

HEAVEN'S VERY SPECIAL CHILD

2011-01-18T00:35:00.006-05:00

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets way down there.

She may not run or laugh or play,
Her thoughts may seem quite far away,
In many ways she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

Words cannot describe the honor I feel for being chosen as Kaitlin's mommy. I see who I want to be in your eyes, Kaitlin. You are a true testiment to strength. My life has become clearer since you. Forever could never be long enough. Together could never be close enough.

Back We Go

2011-01-11T19:09:00.002-05:00

Ok, so doc called us first thing this morning and ordered an urgent EEG for Kaitlin. He told us to prepare for an admission to the hospital down at Albany Med. We went down and Kaitlin did great with her EEG. She is just such a good little girl :-) Such a little trooper! After the EEG, we went down to clinic and waited for the doc to get a chance between scheduled patients to see Kaitlin. We went in finally. The EEG results hadn't been sent to him yet, so he couldnt read it but I had brought my laptop to show him some videos that I had taken of Kaitlin's new "twitching/seizing" episodes. He looked at them and did some altering to her meds and will call in the AM after he gets the results so we can discuss where to go from here. Luckily we didn't have to stay overnight! I was crossing my fingers on that cause even though Kaitlin is always so good about it, I just didnt wanna put her back through another hospital stay less than a week after we got out of another hospital! I'll keep you all updated on what comes of this test and where we go from here...

2011-01-10T21:43:00.002-05:00

Kaitlin and I wanted to come on and let everyone know that she is home from the hospital and doing well. We are still trying to figure out what the new "twitching" is, but the pneumonia is gone. We went to her checkup this past weekend and things looked well. Kaitlin is still tired, but enjoying just laying around the house and resting!

Now more exciting news...I got a call today from the South High Marathon Dance team and Kaitlin has been chosen as one of their recipients for this years event! Kaitlin and I are so thankful for this opportunity and recognition of her struggle! The dance is on March 4th and 5th. We are really looking forward to taking part in this very special event that has been touching peoples lives for over 30 years!

Curveball

2011-01-04T14:39:00.002-05:00

So unfortunately Kaitlin and I are kicking off the New Year in the hospital. Yesterday she was having some strange twitching throughout her whole body and also what I thought was a laughing seizure. I've recently been made aware of those and my mom, stepmom and I all witnessed an episode that we all agree must have been one. After I talked to her doctor and he suggested that I go, I brought her to the ER about an hr after the twitching started. We spent 5+ hrs in the ER. CT scan, chest xray, blood draws and an IV started with fluids and ativan to stop the seizing. CT came back fine but the chest xray was showing right lower lobe pnemonia. We were admitted. Today has been alright. Kaitlin is tired but getting fluids and antibiotics through the IV. She ate a good breakfast and then some broccoli for lunch and thanksfully is napping now. Doc says we're looking at atleast 3-4 days here. The twitching started back up again this afternoon but seems to have subsided for now. Thanks for following Kaitlin's Journey and I'll keep everyone posted.

Trials and Research

2010-12-16T00:27:00.003-05:00

As most of you know, Kaitlin was the first to be called for an evaluation for the clinical trial at Weill-Cornell Medical College down in NYC. This trial deals with gene transfer while the trial out at OHSU in Portland, OR deals with stem cells. To give some background, Kaitlin was called down in March of this year for her eval. She left there and we were told she scored a strong 6 if not a 7. We waited for what seemed like forever for a call back and we got one, 5 months later. Kaitlin and I made the trip down to NYC and did the last bit of consenting for the trial and a quick updated eval. Everything went great. She did amazing, I couldn't have asked for more. We were then told a surgery date of August 24th which was 15 days away. Two days later Cornell called me. I got my heart ripped out. They told me that she cannot participate any longer because the doctors scored her a 5 1/2. I can't explain what was going through my head during that conversation. I got off the phone and just lost it. How can you tell me surgery is two weeks away and then just rip the rug out from underneath us? With time, we got passed that. Now came OHSU, our trial of choice. Finally it opened up for recruiting! We'd been waiting so long; since June 2009, which was less than two months after her diagnosis. They called Kaitlin first again! I thought this was going to be a sign! Called first for both trials!? What an honor! And such good news! Her medical records were requested and after reviewing them she looked like a great candidate. Great. Then came the next step...medications. This is where we came to the end of the road. Kaitlin is on 4 anti-epileptic drugs. No more than two are allowed for the trial. Kaitlin is now disqualified for BOTH clinical trials. Unlike Cornell, I can't say anything bad about OHSU. We have had a great experience with the doctors there and support their research. Cornell on the other hand, it incredibly unprofessional and deceitful.

No great surprise to me...the trial has been put at a stand still in NYC because of the adverse affects a patient is having. This is just the much needed affirmation that we made the right choice not to pursue them for the parallel study that was being offered for children who didn't meet requirements for the main trial.

While Kaitlin is said to not be healthy enough for these treatments, I believe that she is very strong and will continue to fight next to me. Our reality has changed from playing on the jungle gyms at local parks to enjoying the simple things we overlooked before; our down time together. We live a much quieter life now, but still very fulfilling. Kaitlin still loves to play, be read to and watch "toonies" with her Mommy. While Kaitlin's mobility is dwindling, her passion for independence certainly is not. Her seizures are well controlled, her eyesight continues to be unaffected and there is still a smile on her face at all times!

At this time, there are no known treatment options for children with Batten Disease here in the states, but we will continue to have hope that one will come along in time for Kaitlin and others like her.

Remember: Help Us Help Her

Happy Holidays!

2010-12-14T02:17:00.002-05:00

Kaitlin and I are in the Holidat spirit! We are enjoying the lights and eachothers company everywhere we go! So far, I'd have to say that Kaitlin has seen Santa atleast 5 times off the top of my head. She just loves him! Last weekend we had photo's taken by Olan Mills Photography! Kaitlin did very well, grumpy at times, but it was late and my angel was tired. I'll post as soon as I get them in! Remember if you are stuck on what to get someone for Christmas, just go to www.ayliprod.com and check out the Kaitlin Kollection! There you can buy coffee mugs, calendars and even mouse pads with a picture of Kaitlin from the gymkhana earlier this season! 50% of the proceeds go straight to Kaitlin! Also remember if you don't already have one, grab a Coming Together for Kaitlin bracelet and show your support outwardly for Kaitlin everyday!

All our love,
Becky and Kaitlin

Kaitlin is Home!!!

2010-11-29T23:34:00.002-05:00

I am so so so so so so so excited to say that Kaitlin got home tonight from her visit with her dad and I'm very happy to have her back. I just can't stop kissing her and loving her! She did well and had a good time. Back to school tomorrow, followed by aquatic therapy, which Kaitlin loves. We are going to the lodge this weekend so I'm very excited to get Kaitlin in the pool! She seems like she might have caught a little cold on her visitation, but hopefully we can get that out of her quickly so she can enjoy herself! I put the Christmas Tree up while she was gone and when she walked in the door she was so excited to see it! She smiled and played with all the pretty lights and bulbs :-) I didn't get a chance to take too many pics tonight, but here is one of her trying to touch the star!

Update on Kaitlin

2010-11-15T09:25:00.004-05:00

Kaitlin is doing well. Happy and strong. With this said, she has been very moody lately, crying without cause or warning. I've been giving her a lot of Epsom salt baths which calm her down and relax her for a little down time. I recently got a set of walking wings for her which helps my back out A LOT! It also gives Kaitlin the false impression that she is walking without me holding her and she loves the "independence"! We have her new safety bed in the works and also a new gait trainer that is lighter and easier for her to maneuver. She pretty much uses her Pacer as a stander now as she has a hard time moving it now. With this all said, we are looking forward to spending the holidays together and enjoying the plans we have ahead of us.

Yankee Candle Fundraising For Kaitlin!!

2010-11-02T23:35:00.002-04:00

www.yankeecandlefundraising.com

Click on the link and then go to catalogs on the top. You can choose from anything in the Fall/Christmas catalog :-) If you are interested in purchasing items through the catalog for yourself or Christmas gifts, they will be here by Christmas so please feel free! 40% of the sales go straight to Coming Together for Kaitlin! Checks can be sent to me by mail or you can pay online at Kaitlins webpage as a "donation" using paypal or a credit/debit card. In the notes section just put what item(s) you would like and I will send it right out to you! Spread the word. Again, payments can be made here on the website through the paypal link used to order bracelets. Just log it as a donation and I will do the rest to process your order!

Thanks for your support!

Becky and Kaitlin

Orders need to be in by Nov. 12th...please let me know if you have any questions and pass this along. All are welcome and will be appreciated!

Ride for Kaitlin Update

2010-10-25T00:57:00.002-04:00

The event was a huge success! Kaitlin had a blast and loved every second of it! She needed to take a nap after her first two rides, but then she woke up and got the CHAMPION ribbon!!!! She killed it! Great day, thanks for everyone who helped out and attended. We appreciate it more than you imagine. Cindy, you are amazing and keep making Kaitlin's wish to ride horses come true! She really is a little riding fool! Thanks!

Ride for Kaitlin

2010-10-12T00:25:00.002-04:00

October 23rd at 10am we are holding a benefit for Kaitlin is Johnsonville at Color Run. www.colorrun.com for direction. This event is a family fun day for everyone. As you all know, Kaitlin loves horses! After Kaitlin's article in the Post Star this summer, a local family reached out to us. Kaitlin, Donny and I accepted their invitation to come up to their farm and let Kaitlin see the horses and ride them! She LOVED it! We have stayed in contact and Cindy has since come to family gatherings. She wanted to help Kaitlins cause further and has put together this event in Kaitlins honor! Come on our and Help Us Help Her. Kaitlin and those like her need our help. $15 per rider/horse combo. Several events will take place. Food all day. Donations will be accepted from anyone else in attendance whom are not riding.

2010-09-11T00:17:00.002-04:00

Horse farm tomorrow for K to check out some horses. A local family heard of Kaitlin and extended an invitation for her to check them out, so we'll head to Salem tomorrow for K to enjoy some horsey time then Sunday is the Stroll for Epilepsy. Everyone should come on out and enjoy the day. It is at the State Park in Saratoga; registration at 11 and the 3.5 mile walk starts at noon. The Holiday Inn is hosting a BBQ lunch afterward and face painting for the kids! Come out and help kids like Kaitlin who's everyday life is a struggle due to epilepsy! See you there!

My Little Angel

2010-09-06T23:24:00.002-04:00

After learning about Kaitlin's regression causing her to fall out of the running for the clinical trial at Cornell, I've been searching for an alternative. A Portland hospital that Jason and I took Kaitlin to after she was first diagnosed is working on a second phase of their clinical trial using stem cells. I am hoping to find out more information about the procedure and whether or not Kaitlin will meet their requirements in order to participate. More fundraisers are in the making and we will need continued support in order to fund treatment for Kaitlin in the event that she qualify for this trial either. Details will be coming on all. On a happier note, Kaitlin got her leg braces recently and is doing great. School starts on Thursday and I'm sure she is going to enjoy going back and making more friends! The Stroll for Epilepsy is this Sunday at the State Park in Saratoga. We have a team together walking for Kaitlin as she is very much affected by epilepsy. Our team name is Coming Together for Kaitlin and all are welcome! The walk is 3 miles and the event will be a great way to spend your Sunday afternoon!

2nd Annual Coming Together for Kaitlin

2010-08-29T21:14:00.003-04:00

The benefit went amazing yesterday! Thank you to everyone who came and helped out! We really had a great time and Kaitlin and I are very touched by everyones generosity. The benefit was a great success and we look forward to next year! I'll keep posting updates on Kaitlin and upcoming events! Onward and Upward!

FYI

2010-08-21T01:15:00.002-04:00

I'm attempting to contact all news and radio stations as I can. As far as I know now, Kaitlin has an article coming out in the Post Star on Thursday, Aug 26th. If you go to their website www.poststar.com and search kaitlin bowman you will come up with some pics from this last shoot and prob the article from last year as well.

Kaitlin's 2nd Annual Benefit

2010-08-20T00:31:00.002-04:00

Kaitlin's 2nd Annual Coming Together for Kaitlin benefit!

Come join us Saturday, August 28th at 373 Crescent Ave in Saratoga Springs at the Eagles Club! Food, Live Bands, Raffles and More...It's a day of family fun for everyone. $20 admission for adults, $5 for children under 12! Help Us Help Her!!! Kaitlin needs our help traveling through this painful journey she faces. There will be face painting, a bouncey bounce house, music, pony rides (weather permitting), and many of other fun activities!

Make-a-Wish

2010-07-09T21:57:00.003-04:00

So Kaitlin finally got her Make-a-Wish settled! Last night we had a little party for her and she received her handicap swing for the swing set, a handicap tricycle(which she hasnt gotten off of yet) and family season passes to Magic Forest! Kaitlin absolutely had the best time last night and loves her gifts! She loves the bike so much that she even wants to sit on it while watching TV!

On the medical topic...no info on the trial as of yet. Kaitlin has been pretty tired lately, but her appitite has been great! She is eating meat again, mostly chicken, and she hadnt really wanted much of that sort in a while so we are really happy about that. I switched some of her sippy cups and got her some new ones and she is doing much better as far as the choking on liquids goes. These cups are doing really well for her drinking! School is good, therapies are going well and she is swimming all the time, so that is probably why she is so wiped out all the time! This weekend I'm expecting to go to Magic Forest for the first time this year and we will definatly be taking her out of her bike as well.

2010-06-30T22:48:00.002-04:00

https://atl.etapestry.com/fundraiser/EpilepsyFoundationofNorthea/SaratogaStrollforEpilepsy2010/?etapCacheBuster=1277951955911&shareMedium=label.facebook

Click on the link about to the Saratoga Stroll for Epilepsy! Then go to the Help our Cause section on the right hand side and click on Find a Team/Participant. Either put in my name or Coming Together for Kaitlin. That is our group name! Donate and sponsor us or join our team! Lets make the biggest team there this year! Come be a part of this great cause. Epilepsy is only one condition of Kaitlin's disease, but it has a major affect on her life! Please help us help her and those like her.

2010-06-18T17:27:00.002-04:00

My little angel has had a pretty tough two weeks. She's been struggling with a cold she just cant shake and then got pink eye and now a double ear infection! Poor girl. Her immune system is really weakened by her disease; she never used to get sick like this. It really wipes her out too. When she gets sick, she just gets so weak and shaky and cant get around very well at all. This past week she hasn't really done much of anything on her own. We've gone out for some walks and played in the yard, but her usual million times up the ladder and down the slide has quickly turned into a maximum of 2 to 5 at best :-( Donny and I took her to the zoo this past weekend and even though she didn't have the energy to get out of her chair, she still really enjoyed seeing the animals and feeding them! I'm looking forward to taking her back when she is more like herself. Has anyone else stumbled across the thought that animals really can tell the difference when they are around someone who is as special as Kaitlin?? It seems that whenever we go to the zoo, animals really pay a lot of attention to her! They say dogs can sense a seizure coming on or heart attack...do you think its possible that they just sense a compromised person? Cause monkeys really like her! We walked in and all 3 in this one cage immediately went right in front of Kaitlin and hung off the cage and just looked at her! She thought it was great :-) I'm gonna go ahead and tell myself that its true and they can tell that she is a special, beautiful person.

Beauty Queen

2010-06-14T22:35:00.003-04:00

Kaitlin had another photoshoot with amazing local photographer Tracey Buyce! Go to http://www.traceybuyce.com/ to check a few of them out! These pictures are priceless and just gorgeous. I decided to cut Kaitlins princess hair that I'd be so reluctant to do because it had become very hard for her to get around with it. When she was crawling, she'd get it stick under her knees. When she was laying in bed, she'd try to sit up but would be laying on her hair and would fall back down. And the bath was getting increasingly hard for both her and I to handle her hair. We donated 14 inches to Locks of Love the day after she got these pictures taken. Since then, she is doing very good. Its more of a change for me then it is for her. She loves all of her new clips and hair bands! I'm having issues cause I cant do as much with it as I could before, but I know it was the right thing to do for Kaitlin. As far as the trial goes, I still dont have any new information. I'm on the edge of my chair as I'm sure you all are too! Kaitlin's Make-A-Wish is FINALLY done! I asked for the handicap swing and bike that I was going to buy for her and also a family season pass to Magic Forest. For those of you who dont know Magic Forest, its a little amusement park just perfect size for Kaitlin. She had so much fun last year and I hope she can still have just as much fun this year!

2010-05-11T23:08:00.002-04:00

Kaitlin has been doing pretty good. We have an appt in the morning with her neurologist, just a check up. We got 3 out of the 4 pieces of safety equipment we are waiting for; everything but the feeding chair. She loves her "wheelchair", its more like a stroller I think, but she likes it a lot. She was watching tv sitting in it the other day! We went to a bike race in downtown Saratoga last weekend and she absolutely loved it! I'm not sure if she liked watching the bikes go by more or the icecream that we got after, but she had a really nice time. Mothers day was good. I spent it at home with Kaitlin and Donny and it was all I could have asked for :-) I have Kaitlin walking on the treadmill on an average of 4 to 5 times per day. She goes for ab0ut 2 minutes each time and while I think its exercise, its still fun for her and I think that it is really helping her strengthen her legs. Her walking is improving the past 2 weeks and I couldnt be prouder!

My Silly Girl

2010-04-20T23:54:00.004-04:00

The past week has been good. We are having a problem with seizures in the car. The sunlight flickering through the trees does it to her every time. I'm gonna get a different sun shade. I was hoping the window tint would be enough to block it out a bit, but no go. Other than that, the weather has been nice enough for us to go outside more. She loves being outside. Donny and I were trying to go to Old Navy with her to get her some grippy socks to walk on the new wood florr with and to our surprise, there is a carnival at the mall in the parking lot! Kaitlin LOVED it! She had an awesome time, we all did. Another nights, we were at my dads house and I look over and Kaitlin has her head in the dollh0use! She is so silly!

Finally back home!

2010-04-12T23:15:00.002-04:00

Kaitlin spent 2 weeks with her dad and got back last night. God I missed her! But while she was gone, I tried to keep busy by taking up the carpets and putting in wood floors so that when she got home, the walker that I got for her would be all ready and easy for her to use! She loves it! She thinks its a bike haha. She came in and was so happy to see her chair, a recliner I got her for xmas, and then she looked over and saw the decked out walker I made for her, and was like, "Its a bike!" I put princess stickers on it and a basket so that she can have a place to put her books that she always carries around with her. She loves it and I think after a few weeks, she will really get the hang of it. It's kinda like bumper cars in here now with it, she smashes into EVERYTHING and thinks its hilarious! On the medical front, not much has changed....her fevers have stopped though and her ear infection is gone, so thats def a good thing! We dont have any new information about the possible trial other than maybe May or June for another call if she meets their initial criteria. I'll keep you all posted. Thanks for following Kaitlin!

2010-03-31T21:05:00.004-04:00

Spring has been good to us so far. Kaitlin and I went to my friend Katie's Bridal shower and both had a great time. Kaitlin helped open presents and OFCOARSE she went for the biggest ones there! Thats my girl! Kaitlin has been having re-occuring fevers and a cough but is on meds for an ear infection now. We're crossing our fingers that the ear infection was the cause. Any little cold really wipes her out now-a-days. Kaitlin is visiting with her dad, who is in town and I'm sure is having a great time. I talked to her last night when she was taking a bath with her daddys help. Today, I went to school and visited Kaitlin. She was practicing with her walker that she uses in PT. She looked up and saw me and got a big smile on her face and I was too happy for words. I miss her so much when she isnt with me. Sleeping is hard without her little arms wrapped around my neck, but I just keep telling myself she will be home soon. I miss her every minute. On a happier note, her safety equipment will be here soon. And I bought wood flooring to replace the carpet so that she can get around easier in her walker. Just have to put it down now...thats gonna be the hard part, but I'm confident that I can do it. Next purchase is the JennSwing; a handicap swing for the swing set so that Kaitlin can still safely swing cause she LOVES to swing. I'm very excited about that. Bracelets are still for sale and very much appreciated. No new news from the Cornell study, its a waiting game for them to take the next step. Hopefully Kaitlin's results will be what they are looking for and we'll get a call back. The only thing that I found out is from her eye appt; that Kaitlin's fine vision is deteriorating. Sad. I havent noticed a change in her eye sight, but they say its going...I have an appt for her with her regular doctor here to do another bout of tests so that I can find out more specific information. I'll keep you all posted on what comes of that.

New Possibilities...

2010-03-04T09:55:00.002-05:00

So I got a second call from Cornell and Kaitlin is going to be the first child they see for the trial! We are going to the city next Wednesday, March 10. Kaitlin has to be checked in by 9 am on Thursday morning. There are a few tests they want us to get done BEFORE we go down, EKG & chest xrays, posterior and lateral. So I have contacted her docs and they are ordering them, we will get them done today or tomorrow so that we will have the results when we go. I'll keep you all in the loop and just make sure you keep Kaitlin in your prayers! Thanks guys!

2010-02-28T00:00:00.002-05:00

Kaitlin has been having a pretty good time lately. Things are much better now that she has gotten over the RSV. Her cough is almost all gone, so now we are just doing breathing treatments when she flairs up. Her sleeplessness isnt happening every night anymore, so I'm only giving her the Melotonin when I feel she needs it. She has been doing very well getting probably 5 nights out of the week, very restful sleep at night. Today we went outside and took advantage of the ridiculous amount of snow we got this week. We went sledding and made a very big snowman. She loved it. She patted Frosty and just really enjoyed looking at him :-) She sat in the snow and laughed and just had an awesome time with her Mama. It was great. My sister was here so Kaitlin got to play with her also, which she loved also. She is back to her obsession with The Land Before Time and wants to watch it all the time and when she cant watch it, she holds the DVD case! Silly girl. This has been a good week and I already cant wait for next weekend to come when I dont have to go to work or bring her to school and we can just be together. We painted alot this week, esp one day when we were snowed in together, it was awesome! Kaitlin and I have been doing alot of painting, she loves it and I love the smile it puts on her face! I've noticed she is getting very needy when it comes to her Mommy. She asks for me all the time and just wants to sit together and hold eachother. I love it, every second of it :-)

Back in the Hospital

2010-02-11T16:46:00.003-05:00

So Kaitlin was admitted to Albany Med Monday Feb 8th. We are still there waiting for some more imnprovement before we can go home. She was diagnosed with RSV and since she is already compromised health wise, she is expected to take a longer recovery than others. Her breathing was very labored and extremely difficult for her. Cough, runny nose and bad fevers have accompanied the trouble breathing. She is having a hard time, but is doing much better than when we first came in on Monday. I'll keep you all posted on her recovery. Hopefully it will be speady!

Update

2010-02-07T18:10:00.004-05:00

Kaitlin was getting over her cold very well, but it seems that last night she started to get the purring sound again when she breathes. Her fever was 101.3 at noon today, so i'll be watching her closely and if it isnt just a day bug, I'll take her to the doc tomorrow to try to catch it before whatever it is really gets going. As far as generalized symptoms, she is pretty shaky lately, but I think a lot of that is due to her lack of sleep. She isn't sleeping well at night at all. Last night she woke at 1 am and stayed up whining until about 6 am,no matter what I did to try to comfort her. I did some reading though, and saw that this is common with Batten's kids. Unfortunatly, just another little side effect that she doesn't need. I tried Melatonin and it worked for 2 nights, worked wonderfully, not so much after those first 2 nights. At her appt tomorrow with her Nuerologist, I'll ask him a little more about what else I can do and maybe changing dose, I'm giving her 3 mg's now and dont really wanna go any higher until I talk to him. She is tired a lot and napping because she cant sleep at night so its a vicious little circle we are in. Hopefully things will stabalize in this area cause my little pumpkin needs her rest...and mommy needs to use K's time asleepto do my hmwk! haha Oh yeah, and we were out to dinner with some friends and Kaitlin got to see Santa! She was so happy and he was great!

Our Weekend Getaway

2010-02-01T20:35:00.002-05:00

This past weekend, we took a little family trip out to a casino/lodge in the area. My parents played the slots a little of course, and Kaitlin, Donny and myself hung around and went swimming in the pool and played. Kaitlin absolutely LOVED the pool! She is a little mermaid in there! We had a good weekend and a much deserved day off of our normal routines!

2010-01-27T22:19:00.002-05:00

Kaitlin has been sick for a week now and its really taking a toll on her. She is so weak, poor little monkey. Slowly getting better though, I think maybe she is conserving her energy herself cause she knows she needs it for her everyday battles. On a happier note, we got the bracelets and they are beautiful. I love them. I'm so happy, Kaitlin loves them also, she put two, not one, lol two on her wrist when I took them out of the bag. They are her favorite color and I'm very pleased with the result. If you or anyone you know wants to help out, every $5 makes a difference. Thanks so much everyone for following Kaitlin's Journey and we will be back in touch soon :-)

2010-01-26T00:11:00.001-05:00

Donations

2010-01-25T01:41:00.002-05:00

I also added a link that people can go on to make donations if they would also like to contribute that way, instead of or in addition to the bracelets.

Bracelets

2010-01-25T01:33:00.002-05:00

We have bracelets that are being sold in hopes of raising money for treatments for Kaitlin and other children like her. The bracelets are just like the yellow "LIVESTRONG" bracelets to benefit cancer you see people wearing. They are purple with white writing. The front says "Coming Together for Kaitlin" and the back read, "Fighting to Cure NCL". These bracelets are $5.00/EA and proceeds go straight to Kaitlin and funding for the treament to help save her life. Please spread the word. Thanks everyone!

Tough Week

2010-01-22T18:32:00.002-05:00

Kaitlin has been having a tough week. She was sent home from school on Wednesday and sick ever since. She has a high fever, runny nose and a pretty nasty cough. Poor baby is so weak when she is sick. Sleep Sleep Sleep is all she has been doing. We went to the doctors today and checked her out and they said she has an ear infection in her left ear and with the meds she should be feeling better in a couple of days. We were gonna go to a Dan Zanes concert tomorrow for kids, but sadly, I think we will have to cancel that. We appreciate everyones thoughts and prayers and will be in touch :-)

2010-01-17T17:49:00.003-05:00

Kaitlin had a bad day yesterday with seizures. Two big ones, one with myself and her Auntie and the other in the ambulance when we were on the way to the ER. Poor girl. After a long day we came home and had a quiet night. Visiting the doctor tomorrow to check her out and see if any changes need to be made. I will keep everyone posted. Thanks so much for following Kaitlin's Journey.

2010-01-04T23:53:00.000-05:00

Today was a good day. We went down to Albany Med for a check up with K's doctor. Her EEG and blood tests taken on Xmas Eve weren't too bad, they were as to be expected for her progression thus far. So news we expected I suppose. We did some more blood work (K does really well with this, she is my little princess, she whines a little when they take her blood, but right after before we get out of the chair, she says "Thank you") So precious! I came home with her after our trip was longer than planned and we played with some new presents she got, a tunnel is one of her faves, we crawl through that thing all the time! Thanks to everyone who is keeping tabs on us, we appreciate all of your hopes and prayers for us. I will continue to post her updates as they come:-)

Kaitlin's Story

2010-01-03T14:02:00.000-05:00

August 2, 2005, an angel was born. Kaitlin Marie Bowman came into this world so beautiful and was a blessing to her parents from the start. She advanced in almost every aspect up until about age 2. July 15, 2008 Kaitlin had her first seizure. We had no idea what was in store for her. December 2008 we got the diagnosis of myoclonic epilepsy. From that point, she underwent testing to find the cause of her epilepsy. Continuing to decline, we watched and waited to find out more. April 24, 2009 our lives changed drastically. Kaitlin was diagnosed with LINCL, a form of Battens Disease. Late Infantile NCL is a progressive, neurodegenerative disease associated with cognitive impairment, vision loss, seizures and poor motor function. Symptoms begin between the ages of 2 and 4 and the children suffer from mental impairment, worsening seizures, and progressive loss of sight, speech and motor skills. Eventually, children with Batten disease become blind and bedridden, with a life expectancy of 8 to 12 yrs old. I am not going to accept this future for my daughter and need all the help and support I can get. Kaitlin touches everyones lives who meet her and I am committed to finding a treatment and cure for this horrible illness.