A Rose for Sarah

Today Kaitlyn had a wonderful day. She didn't have a single episode where she stopped breathing or her O2 dipping! We even got to sit out on the porch again and enjoy the breeze. While we were outside, we found the most beautiful rose on our rose bushes and picked it for Kaitlyn's special friend Sarah.

A rose for Sarah

One year ago, on August 30th, 2010, a precious little girl named Sarah Elisabeth Glassman, went to heaven. She, like Kaitlyn, also had Niemann-Pick Disease, Type A. She was 3 years and 7 months old when she passed. We never had the honor of meeting her but we feel like we know her and that she is a part of our family.

Sarah

Over the past year, we have become friends with Sarah's parents, Valerie and Aaron, two amazing people. They also have a son, like we do, who does not have the disease. They have helped us in so many ways in understanding what to expect with the disease and in sharing their experience with us. Even though Sarah isn't here on earth, her spirit and her purpose is still here through her family, who are continuing to help others, like us.

Sarah and her little brother Zachary

Kaitlyn and her little brother Cole

Niemann-Pick disease in itself is so rare, especially Type A. Currently, we know of only 3 other children who have Type A in the US who are living. To be able to meet the Glassman family, spend time with them and have them as friends has really helped us through this journey.
 

Sarah

Kaitlyn and Sarah are definitely soul sisters, I have no doubt about it. Really, they look like they could be real sisters! There are so many similarities between the two it is amazing.

Sarah

Knowing that what the Glassman family is going through right now, the joy in honoring their daughter and the sadness of her loss, is going to be us one day really hits home. My heart aches for them and for us. Please say a prayer to lift up the Glassman family during this time and to fill their hearts with the joy of everything that is their sweet and precious Sarah.  

A rose for Sarah

Our Weekend

First off- Kaitlyn has been doing okay!

She is still having some episodes where she stops breathing but we have been able to stop the episodes before it gets really bad. It is still mainly when she wakes up from a nap, although I was laying with her yesterday while she was napping and I was listening to her breathe and I heard the silence of her stop breathing. I looked up at the monitor and her O2 started dropping.. 99, 97, 95, 93, etc. She was completely unaware of what was happening. I tried rousing her and suctioning out her mouth and was able to get her to take a breath. The episodes don't seem to bother her. I really don't think she remembers them at all. She is never upset afterwards. I guess that is a good thing, just scary for us!

Lazy morning with Daddy

We did get to enjoy the windy day on Saturday. This summer is has been way too hot to take Kaitlyn outside. Her body just can't tolerate the summer heat so we got to hang out on the porch for a little while in the breeze.

Enjoying the breeze

Family photo- Cole is obsessed with our dog Lily!

Cole loves his big sister!

We found a frog friend

Most important of all, we had lots of family time!

Hanging out with Gigi and Cole

Playing with Pepere and Memere

Daddy time

Sunday she was pretty mad all day. We aren't sure why. It seemed as though every time we would move her position, she would get really upset like she was in pain. We did give her pain medicine and tried everything we could think of to make her feel better but sometimes it just doesn't work.

Kaitlyn's friend, Wylder (who also has NPA), has been on Keppra for awhile now and his parents said that he got really sleepy for about a week or so until his body got used to the medicine. Hopefully Kaitlyn will be feeling less groggy and fussy and more like her happy self soon!

That is one of the hardest parts- watching your child in pain or discomfort and feeling like you can't do anything about it. We keep telling ourselves that we just have to LOVE on her as much as possible and never stop trying to make her feel good. That's all we can do. The rest is in God's hands.

Hanging out today

Our curly girl

Good Day

Kaitlyn had a good day today when she was awake. She slept through most of the day. She is only awake for an hour or less at a time. We think this is related to disease progression. I'm sure it takes a lot more to keep her body going than it did before. It seems like last week was her tipping point.

Today when she was awake, she gave lots of smiles! :-) It is such a good feeling to see that she still has happy moments even when her body is failing her. She only had a few minor episodes where her O2 dropped today when she woke up from naps but they were very minor compared to last week.

Almost exactly a year ago! Kaitlyn is sitting on Cole (baby bump).

We don't know what has changed. The disease obviously continues to store sphingomyelin throughout her body which in turn causes normal cells to die. We aren't sure why she had such severe episodes last week and now they aren't as bad. She is on a new medication that may or may not be helping with the episodes but right now, things just aren't clear.

The only answer I can think of is- prayer. Please keep praying for Kaitlyn. Pray that she keeps breathing if she has these neurological episodes and that she is happy and comfortable at home as her disease progresses.

Ahhhhhh!!!! (last year)

I also want to explain the significance of yesterday's post about ice cream. Not all of you know but Kaitlyn is fed completely through a G-tube in her belly. She doesn't get anything by mouth because she could aspirate/breathe it in. Yesterday I gave her little dabs of ice cream on her tongue. She loved it!

Thank you for letting others know about Kaitlyn and for the supportive messages you have sent us.

A HUGE THANK YOU to April and Mike Crow, our friends in Texas who had a surprise fundraiser for Kaitlyn! April is the owner of DaisyCakes and has an incredible gift for baking cupcakes. We just learned about the fundraiser the other week and are so grateful for their thoughtfulness and generosity.  Check out DaisyCakes on Facebook!

Ice Cream

Kaitlyn wasn't very happy today. She normally enjoys books and playtime but today she just wasn't up for it. She slept most of the day and just seemed out of it when she was awake.

This morning I asked myself what would make Kaitlyn happy today? (I do this every day) And today the answer I got was "arts and crafts and ice cream"!

Yummy... Breyers Vanilla Ice Cream!

Kaitlyn definitely enjoyed the ice cream more than the arts and crafts but at least I was able to get her to have some fun even if it was only for a few minutes.

Kaitlyn's Footprint

She did have 5 episodes today where it seemed as though she may have stopped breathing. We were able to get her back to normal by stimulating her/rubbing her body, suctioning out her mouth and blowing a fan in her face. It is a scary feeling, but we know that we have to help her to breathe again. She is so quiet when it happens too. One episode, I noticed she looked a little pale and then I looked at her chest and noticed it wasn't rising. Within seconds, her oxygen concentrations dropped and I had to act fast to get her to take a breath. There is no napping anymore when Kaitlyn naps. My job is to keep her comfortable and with us for as long as she wants. It's a scary job but one I wouldn't trade for anything. I am so lucky to be able to be here with her all the time.

Gigi and Cole

I can't even begin to express how thankful I am that my mom is here taking care of Cole during the day. I wouldn't be able to give Kaitlyn the attention she needs if she wasn't here. I literally can't leave the room for anything, it's too risky. Once the alarm goes off, it only takes seconds for her oxygen to drop.

Ice Cream Happiness!

Please continue to pray for Kaitlyn. We know it's working. A week ago, we didn't think we had another 24 hrs with her. Prayers have already been answered that she is still here with us, even if it's short term. Thank you!

Giving of others

Kaitlyn has had an okay day today. This evening she had an episode where it seemed as though she stopped breathing but we were able to stimulate her and get her going on her own again. It wasn't nearly as bad as the episodes in the hospital, thank goodness, but they could happen at any time. We pray that we have more time with her but that when the time does come, that she will be comfortable and surrounded by love here at home.
 

Afternoon snooze

 






Today Kaitlyn received a beautiful shawl from Community United Methodist Church in Crofton, MD. Thank you Shawl Ministry, it really meant a lot to us and was a very nice surprise.

Special Shawl

In the letter it said this...

May God's grace be upon this shawl...
Warming, comforting, enfolding and embracing.

May this mantle be a safe haven...
A sacred place of security and well-being...
Sustaining and embracing in good times as well as difficult ones.

As you receive this shawl, may you be cradled in hope, kept in joy, graced with peace, and wrapped in love.

Blessed Be!
With Love to Kaitlyn and her parents,
The Shawl Ministry

Yesterday- I spy a smile!

 I also want to say a special thank you to everyone who has contributed to Kaitlyn's Fund over the past number of months. I apologize for not getting individual thank you notes out to everyone in a timely manner- things have been a little crazy around here. We do want to let you know how much we appreciate it and it has really helped lift the financial burden for us so that we can focus on meeting Kaitlyn's needs.

Yesterday- Daddy time

Thank you also to many of Chip's fellow associates at work for bringing us some delicious dinners for the next few days so that we don't have to worry about fixing meals! You are all so thoughtful and caring. It means so much to us to have that kind of support.

Girl time

Another thing I want to mention is just how amazing Kaitlyn's cousin, Makayla is. She came over yesterday just to spend some time with Kaitlyn and while Kaitlyn was napping, Makayla got her knitting supplies out. I've known that Makayla likes to knit but when I asked her what she was making, I was so moved.

Amazing Makayla!

She said that she is knitting sweaters for stillborn babies. I can't even begin to tell you how proud I am of her. She is such an amazing young woman. What a blessing she is.

Balloons!

I often find really great prayers and bible versus from God's Inspirational Promise Book, by Max Lucado, here is one that I like today.

Father, you promised that there would be faith and strength and hope to meet life's problems. Father, give that strength to those whose anxieties have buried their dreams, whose illnesses have hospitalized their hopes, whose burdens are bigger than their shoulders.
 

Sleeping Beauty

Kaitlyn slept off and on quite a bit today. She did have some oxygen dips but none where she stopped breathing. In our world, that's considered a great day! Kaitlyn has definitely taught us what really matters in life and the definition of a good day. She is both a teacher and a fighter, that's for sure!

Snuggle Bug

Given another day

Being able to write that Kaitlyn is here with us and had a good day is a true miracle. There is no doubt in my mind that she is here because of all of you. The prayers that you have said, whether short or long, were heard. We can't thank you enough. Time is precious and we are so blessed to have had another day with our sweet girl.

Kaitlyn with Pepere

Sunday

Kaitlyn had a good night last night and was able to get some much needed rest. She seemed to be very tired during the day too. I'm sure being at the hospital and having the episodes where she stopped breathing took a lot out of her physically.

Sleeping Beauty

After every nap today, within a few minutes of waking up, her oxygen levels dropped. She didn't stop breathing though. So you can imagine that every time she stirs during a nap, we are on high alert. 

We were able to relax a little today and enjoy some family time. Every minute of every day is so precious. Even making a trip to the grocery store today was tough, not knowing what was going to happen while I was away. We definitely don't take our time together for granted. We are hoping for another restful night. Thank you for all of your comments and prayers. They are greatly appreciated and needed!

Reading with Mommy

Fun with Gigi

Cole is excited that Kaitlyn is home too

We are home

Thankful she is still here with us

We decided that the best place for Kaitlyn is at home so we took her home yesterday evening from the hospital. Once we put her in her stroller and rolled her out of her room, she had a huge smile on her face! It was so great to see her so happy.

Once we got home though, she was really fussy, which we think is from the caffeine they gave her at the hospital. The idea is that the caffeine would increase her heart rate, in turn causing her to be more stimulated to breathe. It makes sense but the effects of the caffeine caused her to not be able to take any naps yesterday, when she obviously wanted to sleep and she was so agitated at home that we aren't certain the benefit is worth it. We haven't given her any more of it and it will now be a last resort.

The My Little Pony Pegasus balloon was a must!

Other than being fussy and agitated, she hasn't had any more episodes where she has stopped breathing. We are hoping that the continuous oxygen and the Keppra will help to keep the episodes at bay.

We did have a hospice nurse come out today to talk with us about our concerns. He was really great and also informed us that although the Keppra is primarily used for seizures (which Kaitlyn isn't having), it also causes the smooth muscles in the body to relax. This could be helping Kaitlyn with pain and discomfort that she is having due to the progression of NP.

We are so glad to be home but it is really surreal because other than her episodes where she stops breathing, she is completely her normal self. The episodes in the hospital were terrifying. Watching Kaitlyn stop breathing and having to try and get your child to breathe with an emergency bag/mask yourself before the nurses come in (thank you EMT class in college) is anything but normal. That episode was the worst one she had and there was a moment that I thought was the end. It wasn't though, thank goodness!

The blue bag/mask above her head is what we used to give her rescue breaths

What happens is that she will be acting completely normal and then her eyes gaze off (like she is looking at something above her) and she stops breathing. It usually seems to happen after she has woken up from a nap and has been up for a few minutes. The only warning other than the gazing is her pulse/ox alarming us. She doesn't have any other signs or symptoms- it just happens that fast. One minute she's normal, the next she's not.

Happy girl

We are trying our best to make things normal at home and enjoy every minute together as a family. It is very difficult to relax though when you know things could change in a second. Prayers are definitely needed for us to not be so consumed with worry and anxiety over what could happen and to focus on the fact that she is still here.

I do believe that the prayers everyone has been lifting up for Kaitlyn are helping her and us to stay strong. I can't thank you all enough for the messages we have received. Your outpouring of love is truly appreciated and really makes a difference.

Thank you!

Still here

Yesterday Kaitlyn had 3 episodes where she stopped breathing. She had to be given rescue breaths the last two episodes to get her to breathe on her own again.

She has been back on oxygen since the last episode and hasn't had another one yet. The neurologist is giving her Keppra and will also start her on caffeine, which will hopefully help her to continue breathing through these episodes. We really don't know if any of this will help. The disease progression is effecting her brain's ability to communicate adequately with other systems in her body, like her lungs.

When she is awake and not having an episode, she is her normal self, just a little worn out. Our goal is to get her home so she can be more comfortable and with family. Please continue to pray for Kaitlyn.

Prayers needed

Big prayers are needed for Kaitlyn right now. The EEG showed that the episodes that she is having are not seizures but her brain not telling her body to breathe. She had a scary episode where her oxygen levels went into the 40s and the nurse had to give her rescue breaths with the bag/mask to get her to start breathing on her own.

We aren't sure what is going to happen next. Please pray for Kaitlyn.

Bedtime Prayer

Tonight I read to Kaitlyn from a book of children's bedtime prayers to help her fall asleep. There was one that really made me think of Kaitlyn. It is about God's plans for us.

The Lord's plans will stand forever
Psalm 33:11

A plan, a purpose, a path for you;
The Shepherd has something for you to do.

It may keep you near or lead you afar-
God's plan for you is as special as you are.

If you make a wrong turn and lose your way, He'll guide you back; just stop and pray.

Dear God, thank You for making me part of Your plan.

There is a definite purpose and plan for Kaitlyn here in our lives, and a reason she has Niemann-Pick disease. When we first got her diagnosis, there was no way you could convince me that there was a reason for this horrible disease. I still struggle with why it had to be Kaitlyn and how unfair life can be but I see that God has a plan for her and she has been doing His work by touching people's lives. I see it everyday.

Although she can no longer speak, she has spoken into the hearts of all those she meets. She teaches us lessons about what is important in life and what isn't. At 2 years old, I believe that she has impacted more people's lives than the average person would in a lifetime. She is a true angel and there is a purpose for all of this, regardless of how difficult it is and will be.  

Electrodes!

We thought Kaitlyn had bedhead before!... now she has tons of electrodes glued to her head!

EEG

She is napping peacefully though. The EEG has begun and we spoke with the neurologist. We are going to try and take her off the Keppra to see if she will have another episode so that we can catch it on the EEG. This will help give us a true picture of what's going on. Obviously Kaitlyn's safety is the most important thing and we won't let her get past a certain point without intervention.

We are really hopeful that this will give us some answers so that we can plan what Kaitlyn's future will look like. Those hard decisions that have to be made regarding whether we would take her back to the hospital or if it is her brain telling her body not to breathe and we stay at home and let it run its course.

Again, we are hoping that these episodes are seizures and that Keppra, or another anti-seizure med, will be able to help her for awhile. It won't fix anything related to Niemann-Pick but it will help to prevent some of the seizures and improve her quality of life for a certain amount of time- hopefully. This is best case scenario. 

24 hour EEG

Kaitlyn hasn't had a hypoxic episode (where her oxygen levels drop) since yesterday in the ER. They have had her on Keppra, an anti-seizure medication, that seems to be working. That or she just hasn't had another episode. The doctors are pretty certain that she is having seizures, which at this point is what we are hoping for rather than her brain having difficulty telling her body to breathe.

Yesterday with Daddy in the ER

She will have an EEG done for 24 hrs to monitor her brain waves to confirm whether or not she is having seizures. It hasn't been started yet. We just moved from the PICU to a normal hospital room and are now waiting for the EEG to begin. They also took her off of the oxygen. She still has the nasal cannula in, just in case she dips again so we can crank the O2 up if she needs it.

Yesterday napping in the ER just before her O2 dipped to 40

Kaitlyn is her normal self other than when she has the episodes. We will trying to keep her happy and comfortable. We will be here at the hospital for at least another 24 hrs. Thanks for the many prayers! 

Snuggle time while she napped

Napping while we waited for our new room to be ready

Seizure or not a seizure?

Kaitlyn had another episode today where her O2 dropped to 40! We are at the hospital to determine whether Kaitlyn is having seizures or whether it's her brain not telling her to breathe. In the ER she had an episode while the doctor in the room! It was good for the doctor to see it happen. They are going to give her an anti-seizure med today. She will be in the PICU overnight and then an EEG will be done tomorrow.

Please keep praying...

Kaitlyn did great overnight on 1/2 liter of oxygen. She only dipped twice and that was just for a second and then it was back up. Since she hadn't had any episodes for 24hrs, we decided to take her off of the oxygen to see how she would do.

I took her off at 8:00am and she held her oxygen concentrations really well, upper 90s. Around 8:30am she dropped to 80% in just a few seconds. I tried stimulating her and rousing her to see if that would help her concentrations go back up on their own but it didn't. I immediately put her back on oxygen. It seems that when she is on the oxygen she is less fussy, sleeps better and is overall happier. At this stage, we really want her quality of life to be the best that it can be. If it means that she is happy with oxygen, oxygen it is!

She had another episode as I was writing this. She was on oxygen, turned blue and dropped to the 50s in a matter of seconds.

The scary part for us is that her brain may not be telling her body to breathe at times and this could just get worse. There are a lot of decisions that Chip and I have to make regarding what is going to be best for her in the long run. Hopefully, we will have plenty of time to make those decisions but with episodes like this weekend, that came out of the blue, reality of how quickly things can change is extremely difficult.

Please keep the prayers coming. Kaitlyn is an amazingly strong little girl, but the power of many people praying can move mountains. Please encourage others to visit her blog and learn more about her and pray for her. Of anyone I know, she deserves it. Thank you from the bottom of our hearts. 

Feeling better today

Hanging out in her big girl bed!

Kaitlyn has been on oxygen for 24 hrs without another episode where her oxygen concentration levels have dropped. This is really great!

We are keeping her on a low level of oxygen tonight and if it goes well, try her without oxygen tomorrow. We will be keeping the pulse/ox monitor on her all the time though so that it will alarm if her levels get too low.

Thank you for all of your prayers! Please keep them coming, we need them!

Changes

Today Kaitlyn was on oxygen all day. We varied the amount she was getting at times so that we could check to see how she was doing on her own. She had 5 episodes today where her O2 concentration dropped dramatically in seconds! These were even while she was on oxygen. One time she dropped in the 50s.Very scary. When we talked with the hospice nurse, she thought that Kaitlyn may be having petit mal seizures, also called absence seizures.

Absence seizures involve a brief, sudden lapse of consciousness. Absence seizures are more common in children than adults. Someone having an absence seizure may look like he or she is staring into space for a few seconds.

Signs of absence seizures include:

• Vacant stare
• Absence of motion without falling
• Lip smacking
• Eyelid flutters
• Chewing motions
• Hand movements
• Small movements of both arms

Absence seizures last only a few seconds. Full recovery is almost instantaneous. Afterward, there's no confusion, but also no memory of the incident.

From the sound of it, it looks like this may be what's happening. It seems to be right after she wakes up from a nap, which we have been told that the transition from sleep to wake can also trigger absence seizures. We have seen the staring into space, throwing her arms up over her head and small chewing motions. When her oxygen has dropped, it usually looks like she is staring into space.

She hasn't been officially diagnosed as having petit mal/absence seizures but all signs are pointing in that direction.

We also changed her crib into a full size bed so that we can lay next to her and comfort her at night when needed.

It is definitely a new chapter in our lives and not an easy one. We pray that the episodes do not get more serious and life-threatening and that we are able to manage them at home rather than subject her to the hospital. Thanks for your continued prayers for Kaitlyn. She is a true miracle and I can't imagine what her little body is going through.