It's been a busy week!

It has been a very busy week for us at home. We have been interviewing nurses this week. We have met a few really great ones with a high level of expertise. This is one of the most important qualities to us, along with being able to mesh well with our family.

Getting ready for a Halloween Craft

Kaitlyn is doing really well. It seems that she doesn't have the virus at all anymore, however, her platelet count hasn't gone up from last week. This means that if she were to get sick again, her count would probably drop further and she would need a blood transfusion. We are praying that her counts start to go up and that we can stay away from any other bugs out there. She also got her flu shot this week.

Halloween craft! Cole's footprint ghost

I beg everyone out there to get a flu shot, even if you are one of those lucky people who don't ever get sick or you don't believe in getting flu shots. Please do it for all those little ones, like Kaitlyn, and protect them from life-threatening situations. I got mine a CVS and didn't even have to wait! So many of you want to know how you can help. This is a way you can help! Go get a flu shot- today or this weekend.

Halloween craft! Kaitlyn's footprint ghost

Kaitlyn's seizure-like episodes have been less this week and we have seen some more smiles! :-) I can't even describe the feeling I get inside when she gives us a big grin. It's the best feeling in the world. We are really looking forward to having a great weekend together with our family. Kaitlyn's Granddaddy (my dad) and GrandDot (my step-mother, her name is Dot) are coming down today to spend some time with us. We are so excited to see them!

Kaitlyn's cousin Makayla and Chip!

In previous posts, I have mentioned our amazing niece, Makayla. Apparently everyone at school also recognizes her awesomeness and has crowned her as the homecoming princess for the sophomore class! She asked Chip to escort her on the football field tonight when they announce the princesses during the homecoming ceremony! Chip is so excited. I will be at home with the little ones but I'll post a picture of them this weekend. :-)

Wylder

Also, please, please pray for our dear friend Wylder. He also has NPA and is currently in the hospital battling sepsis (a blood infection). He is on some serious antibiotics and he could use some prayers that his blood cultures come back negative today. Here is his blog for the latest. Wylder's Blog Just click on the picture to see the latest update.

Hope everyone has a wonderful weekend!

Yet what we suffer now is nothing compared to the glory he will give us later.
Romans 8:18

Flower Power

Bedtime, one sleepy, one not so much!

Kaitlyn is doing well! She seems to have gotten over the virus. She even slept really well last night! We did increase her anti-seizure medication to 3ml of Keppra since she did have a bunch of episodes over the weekend. Hopefully this will help her.

Smiling! You can even see a dimple in there!

On Sunday we got a beautiful bouquet of flowers from our friends- the Redwood-Sawyerrs! They had them placed at their church in honor of Kaitlyn, All Saints Anglican Church in Matthews, NC, for this past Sunday's service.

In the bulletin it said "Flowers are placed in Thanksgiving for the Blessing of life for Kaitlyn Bourgeault, and her dedicated parents, Chip and Deanna."

Kaitlyn loves the flowers!

Thanks Miss Christine!

Thank you so much! It was such a nice surprise and very thoughtful. We appreciate all the prayers and blessings for our sweet girl.

Reading with Mommy

Hanging in there!

Kaitlyn is hanging in there. She definitely isn't feeling too great but she hasn't gotten any worse- yay! Her white count was a little low and her platelets were in the 70s. Not too bad for having a virus. Normal for her is about 120 or so. The doctors don't really start considering a transfusion unless it dips to the 20s-40s so she is good for now.

Smiling

It seems like every day is different with her and how she feels- a true roller coaster ride. Yesterday she had 5 seizure-like episodes in the morning and we ended up having to give her diazepam. Once she had it though, she didn't have any more episodes! Diazepam is a medicine that is usally used as a "rescue" drug. If she were to have a seizure that doesn't stop, diazepam would be given to help stop it. It's not something that is supposed to be used every day but used as needed instead. We are using it when her episodes get aggravated. I learned that viruses can also aggravate seizure-like activity so that could be a reason why too. 

Watching her fishies

Either way, we are glad she hasn't had a rapid decline in her health, considering her body's weakened immune system with the disease. We are really optimistic that she will be able to get rid of this virus on her own. Her oxygen saturations have dropped just a tad but nothing too significant. She is still on oxygen 24 hrs a day.

Like brother, like sister

Hopefully this weekend will provide her some good family time to get lots of love and rest.

Sweetness

Cole is feeling better and I'm doing well too. Now we just have to knock this bug out of Kaitlyn!

Feeling better!

On another note- Kaitlyn and I have been having "talks" about important things in life. I do these every once in awhile to teach her about life. I talk with her and draw a picture as we go along in our talk to describe/show her what I mean. Even though Kaitlyn can't talk, I feel that it is so important, as her mother, to teach her the things that I have learned in life. She deserves to know about the important things, even if she may not directly be able to show that she understands. Here is a recent one we did when I talked to her about our hearts and what our hearts are made of.

Our Hearts by Mommy and Kaitlyn

I told her that our hearts are made up of many layers. The core of our hearts belong to God and Jesus. That they live within us and we are here for a purpose- to share God's love with others. The second layer of our hearts belong to our family. We are to love and be there for each other no matter what happens in life and that we will love each other always. Being a family is so important. The third layer of our hearts belong to our friends, neighbors, etc. We are always to be kind to one another and to remember that God loves everyone and everything and so should we.   

The Bug

Well it looks like I caught the virus that Cole had and now Kaitlyn seems to have caught it too. She had a fever last night and her throat/voice sounds hoarse. Her hospice nurse came by this morning to check on her and to do a toe prick to check her blood counts. With viruses, her platelet count typically drops. If they get too low, she may need a blood transfusion. Her lungs sound clear, as of now, which is really good. Just praying that it doesn't put stress on her lungs and turn into viral pneumonia. That would be really dangerous for her.

Morning snooze

On a good note, we increased her anti-seizure medication, Keppra, and it seems to be helping to decrease the amount and severity of episodes she has. We are up to 2.5 ml twice a day. Yesterday, she didn't have any and this morning she had a minor one! She is also smiling a bit more!

Please keep the prayers coming for our sweet girl. Thanks.  

What a treat!

We got the best treat this morning. We woke up around 6am and Kaitlyn was giggling in her sleep! We haven't heard her giggle in over 2 weeks so this was such a wonderful moment for us. With Niemann-Pick disease, children can lose abilities and never regain them back. Knowing that she still has it in her is such a blessing, even if it is just when she's asleep.

Kaitlyn and Cole- best buds!

Over the weekend, we were pretty much cooped up at home. Cole went to the doctor to have his ears rechecked and his ear infections are gone (yay!) but it looks like he now has a virus (boo!). The doctor said his throat was really red and that's why he hasn't been drinking his bottles or sleeping well. We really hope Kaitlyn doesn't catch it or hasn't already caught it. It's so hard to tell sometimes why she is fussy since there are so many things that could cause her pain and discomfort.

Smooch! (before we knew about the virus)

Viruses are really dangerous for children with NP because their immune system is already weak. The lungs are also a weak point and viruses that effect the respiratory tract are especially life-threatening. Please pray that Kaitlyn doesn't get this virus and that if she does, that it doesn't effect her lungs or breathing.

Poor guy isn't feeling well

Over the past few days, she has had some episodes that are more seizure-like. These are different than the episodes where she stops breathing completely. Her oxygen is starting to drop a little with these seizure-like episodes despite being on oxygen 24 hrs a day. Last week these type of episodes didn't make her oxygen drop at all so we are obviously concerned.

She always smiles when Daddy gets home from work!

Today has been especially difficult for her. She has had multiple episodes that seem to be more severe than usual and she is starting to get upset afterwards. Before, it seemed as thought she didn't even know they were happening. She throws out her bottom lip and looks so sad. :-(

Hanging out together

We know that this will just get worse as her disease progresses. The only things that we can do are consult with her neurologist about medicine to control these episodes and comfort her at home when they happen.

Checking on Big Sis

Please continue to keep Kaitlyn in your thoughts and prayers as you go about your day. She could really use them.

Hope everyone had a good weekend!

It's Friday!

It's Friday- yay! We are really looking forward to having a great weekend with family. Tomorrow is also our 6th wedding anniversary! Time has really flown by. We are so thankful for our two beautiful children and staying true to our wedding vows- for better or for worse, in sickness and in health...

6 years ago on in St. Lucia our honeymoon

And now these three remain: faith, hope and love. But the greatest of these is love.  
1 Corinthians 13:13

6 years later (at the NPD Conference)

To say our marriage has been tested, is an understatement. Mountains of worry, anxiety, stress, grief, and constant demands. It all leaves little time for us as a couple. We have been through so much and in the end it comes down to one thing- we still love each other.

Under the sea!

As for how things are going with Kaitlyn, she is here and she is good! Praise be to God!

Our men

Kaitlyn has started to have a different type of episode that is more seizure-like. She will get pale and start grinding her teeth. Then within a few seconds, her arms and legs pull in a little and she gets goosebumps. She is breathing through them though which is really, really good! Her oxygen saturation doesn't go down enough to even make the alarm on the pulse/ox go off. You really wouldn't notice that they were happening unless someone pointed it out to you.

They don't really seem to bother her afterwards but I'm sure it takes a lot out of her physically. Because of these episodes, we decided to increase her anti-seizure medication to see if it will help. We are hopeful that we will be able to control her episodes and that she will start to feel more like herself soon!

Hope everyone has a blessed weekend and remembers that the important things in life... aren't things.  

Another Good Weekend

Kaitlyn is doing really well! She had a few episodes over the weekend but none that were severe. She is still having a hard time smiling and we haven't heard any giggles but we are still trying to get them out of her. We got a couple really great smiles over the weekend. :-)

Hint of a smile :-)

Big smile for Daddy!

Stopped to watch his Big Sis for a minute

We enjoyed family time over the weekend and even had super bubble machine time! There were bubbles everywhere!!! Thanks Cheatham family for the cool gift for Kaitlyn. We ALL enjoyed the bubbles!

Super bubble-tastic!

Cole reaching out to Kaitlyn

Before Kaitlyn's recent hospital stay, I was interviewing in-home nurse aides to help out at the house during the week. Now that Kaitlyn's needs are more complex (on oxygen 24hrs/day, the need for suctioning and potential resuscitation) I will be interviewing nurses rather than nurse aides to help out during the day. We had to get approval from the State to get a nurse and we are so appreciative for everyone who made it happen so quickly.

Snoozing with her pals

Silly Gooses!

She still loves books!

Right now, either Chip or I have to be in the room at all times with her in case she were to have an episode. When her episodes happen, they are really quiet and really fast. We can't run upstairs or walk in the next room to get something really quick if needed so having a nurse at the house will hopefully help out. My mom helps out with Cole when she isn't working but on Thursday and Friday afternoons it will be just me and both little ones!

Mommy's Little Monster

Cousin Makayla and Cole- the striped bandits!

Hanging out before bedtime with Pepere

Today Kaitlyn went to the dentist! We were really concerned about her teeth because it looked as though the enamel was wearing down really bad. The backs of her bottom front teeth looked like corn kernels! We have always brushed her teeth twice a day and she hasn't had anything by mouth since getting her G-Tube in February so we were really concerned about a condition called enamel hypoplasia. It is when the body isn't able to absorb nutrients in food like it should, causing a vitamin deficiency. The vitamin deficiency can then cause enamel problems in the teeth.

At the dentist with Daddy

Luckily, it wasn't enamel hypoplasia but rather plaque build-up and they were able to clean it off. We are so, so thankful! Minerals in the saliva can cause plaque to build up even if you brush like you should and don't eat anything by mouth! Crazy stuff.

On our way home from the dentist

So far it has been a good start of the week!

Whatever Works

This week we have been blessed with only a few small episodes where Kaitlyn has stopped breathing. They seem to happen in the morning right before or when I give her her medicine so I think we need to give it to her a little earlier, like right when she wakes up and before her bath. Maybe the medicine from the night has already worn off and that's why she has these little episodes. We have only had to rub her body a little, put a small fan blowing in her face and occasionally suctioning out her mouth to get her to take a deep breath.

Cole "talking" to Kaitlyn with Gigi

As I have mentioned in previous posts, Kaitlyn hasn't been her happy self lately. It takes SO much effort just to get her to smile and we've only heard her giggle once in at least 2 weeks! It just doesn't seem right that all of a sudden it would change like that. The only thing we can think of is that it has something to do with the medicines that she is on. Keppra has a known side effect of causing mood changes.

The biggest smile we can get out of her lately

While we know that with Niemann-Pick Disease, as more and more sphingomyelin gets stored throughout the body, it essentially kills brain cells, causing changes in different organ functions and motor skills. We know that as the disease gets worse, she will lose her ability to smile and laugh but for it to go away so suddenly just doesn't seem right. Of course every child is different but we know Kaitlyn.

My Little Love Bugs

At this point it's all a balancing act. We want her to be happy and have a good quality of life but we also want her to be breathing! So we are currently working with her hospice nurse and the doctors to tweak the medicines (Keppra mainly) very slightly to see if there is any improvement.

Writing a card to Uncle Gavin who is in Afghanistan working to help protect our troops

There is so much that is still unknown with Niemann-Pick Disease and the effect of certain medicines on a child with the disease that it is really a "whatever works" situation. They told us at the hospital that the EEG showed no sign of seizure but the anti-seizure medicines are helping to control her episodes. We wonder if the disease and how it alters the brain signals that the brain sends out would cause an EEG to even be read the same as it would with a "normal" child that has a seizure.

Cole decorating Uncle Gavin's card

Regardless, we know that the most important thing is that Kaitlyn is still with us and we want to make sure that the time she does have here, that she is as happy as possible. We will not give up on trying to find a way to make it happen.

Our sweet girl

Everyday, we try to make it as fun as possible. We have lots of music that we "dance" and be silly to and we are also enjoying the recent dip in temperature (70s-80s) and the nice breeze out on the front porch. It really is the little things, like holding Kaitlyn's hand or sitting outside talking to her or reading her books that are really important. These moments that we share with her are precious.

Out on the porch enjoying the breeze!

Thank you to everyone that continues to pray for Kaitlyn, those that send us positive messages, those who have contributed to Kaitlyn's Fund and those who have shared Kaitlyn's blog on Facebook and with their friends and family. It really means a lot to us.

Cole hanging out too!

Although her episodes have gotten better, it doesn't mean that she couldn't have a really bad one and not come out of it. We are also still needing to find a way to make her happy and get her to smile and laugh again. Please continue to pray for her. We know that it is working. She is still here with us. We didn't think she'd still be here a few weeks ago.

Sibling snuggles while watching Yo Gabba Gabba on the laptop (our tv bulb still hasn't arrived)

Thank you ALL from the bottom of our hearts. You guys are awesome!