Welcoming Nikki

Yesterday morning we were in the car by 8am to head out to Frederick to pick up Nikki. We were all very excited - I was also happy Haven brought the DS. She is usually driving me crazy about 2 miles in to the drive and we have 2 hours to go. My only concern was the stairs when we got their....I hadn't fallen in 1 day and didn't want to fall yesterday.

When we got there all the babies were still there waiting to be picked up. I was surprised but no one wanted the ears cropped or the fur cut. They are just so cute. How could you not love these babies.
Haven holding Miss Nikkideez. We're still slowly working on holding her. She's a bit big for Haven. But she sure is adorable!!!

Nikki did great in the car. We have a 2 hour drive and she went straight to sleep and slept the entire drive. When we got home we took her outside to start getting used to her surroundings. Haven has been doing great with her.

My dad came over to check out the new baby. She is just too cute. They kinda wandered around on the deck for a while.

Haven and Nikki sat down to watch iCarly. Haven said Nikki told her that it was her favorite show. Not sure I agree....but they were talking to each other.

I just love when she lays on Haven's belly. It's so cute. She loves doing this. Everytime Haven sits down Nikki crawls up on her.

Playing with one of her many toys.

She actually fell asleep with Haven rubbing her belly. It was so cute.

Nikki did great for her first night away from her brothers and sister. We expected more crying and stuff. She did a little cry around 11pm and I took her out and she pottied then she slept the rest of the night until about 6am. She was crying and I took her out and she pottied again. We are very happy she is adjusting so well.

Nikkideez arrives tomorrow

Haven is very excited about her arrival. She wants us up early. Her crate has been put together and food is ready for her. This morning Haven received a package from Aunt Dottie. She made Nikki two blankets to keep her cozy warm. They are so cute. Haven is hoping Nikki loves pink because she got her a lot of pink stuff.

See pictures of Nikki tomorrow!

Happy Thanksgiving

Happy Thanksgiving everyone. Haven had a lot of fun today helping me cook! Yes I cooked...Deviled Eggs and Green Bean Caserole. My first time ever cooking this much! We had fun too.

It was weird but 6 of our eggs were twins....what does that mean?

Haven did all the mashing and mixing of the yolk for the eggs!

She even stuffed her own eggs!


My dad has worked hard for the past month. Every minute he could he was out there working. I'd even go out around 1am on the weekends and he'd be sawing, sanding or painting. The goal was to have it ready by Thanksgiving! Looks awesome. The only thing I did was pick out the flooring.

So very nice. It was cozy and warm and they opened the French doors in the house to the porch and it really added a nice feeling to the house.

My sister and her son came by for dinner. They were looking great.

We had a good time visiting with everyone and had lots of yummy food. There were only 7 of us but my dad still had my mom cook 2 turkeys and 1 ham...plus everything else!

Now we are looking forward to Christmas. Kris and Haven will put the tree up tomorrow. We will not be venturing out for Black Friday - in fact all Santa needs is the Internet! Haven is working on her Walmart wish list right now. :)

ROHHAD symptoms

As I was talking to a few of the ROHHAD mom's tonight I realized a few things we are still waiting to see since treatments. I'm not sure if the new ROHHAD children have these issues or not but other than eating/drink and weight we still haven't noticed a change in:

1. pain sensitivity - she doesn't really feel pain unless it's major
2. crying or producing tears
3. knowing when she's cold
4. voice modulation - she talks loud

Happily there are a million more symptoms we can see have improved. Not that I think it's a requirement to be able to cry it's just something she has never done in almost 6 years. What child never cries?

Ready for Nikki

We're ready for the puppy!!! Haven also bought her some clothes and mittens. Yes, mittens. I guarantee that will never happen. We also got her food and cage ready. We can't wait until she arrives!!!

Amazing....

Yes I'm still working on her book and going through photos. Amazing what ROHHAD took from her in a matter of months!

January 2006 with her sister Kendall

Easter 2006 - April

June 2006

September 2006

Charlize Joliat - Beautiful Angel

Charlize Joliat - a beautiful 5 year old girl - has joined the angels in the heavens. She passed away from complications with ROHHAD on November 20th, at 9:05pm.

We offer our deepest sympathies to the Joliat family.

Please accept our sincerest thoughts for your family. We ask that all of you say a prayer for the family through this time.

Although I never met Charlize she was like a relative to me. Our ROHHAD community is small but we are tight and we watch each others children as if they are our own. I can only find comfort knowing two other beautiful angels in Heaven who have also passed. They will find her and they are now a family and they will gain strength to watch over all of our children as they continue to battle ROHHAD.

Charlize you are truly an inspiration to all of us and you will remain in our hearts forever.


Always -

Haven and Misty

Memory Lane

I've been having a few issues lately - feeling like we've missed a few years of our baby girl's life. She's been stuck in hospitals for more than half her life. Today I started working on a memory book for her and going through the photos was hard. Everything was so normal.....at least for the first 2 years of almost 6 now.

Haven as a newborn. Every time her daddy changed her he would massage her legs. She loved it. She would stretch them out and point the toes up! She was so long and skinny....I kept wondering when she would have Michelin legs.

Her 1 year photos. I took her to Baby's R Us to get some stuff for her birthday and made an impromptu decision to spend too much money on photos. We bought the outfit right there and changed. Plop.....she was all smiles for the photos. She loved having her picture taken.

Age 2. Haven was so active. She'd run around like a crazy girl, dressing up and acting wild. Climbing the furniture and jumping on the couches. She rode this scooter around like crazy. This was a birthday present for her 2nd birthday. She immediately when out and rode around on it.

But that 2nd year turned horrible in July. This is Haven's 3rd birthday party. She had gained so much weight, became very reclusive and extra shy. She didn't know how to be around other children. She didn't want to play and became extremely OCD about everything. We started hospital visits over 6 months ago and at this point she was having lots of stomach pains and bleeding. This was the beginning of the sleep walking.

Age 4. Just a few weeks before this photo we had learned that she has cancer. She was scheduled for surgery immediately following her birthday. This was a very high stress time in our family. I cried when I cut Haven's hair - but I still have it saved. She had such beautiful blonde straight hair. Never did I know there was a tumor hidden in her abdomen and an extremely rare syndrome causing all of her issues.

Age 5. This was this year. She had just gotten off steroids she had been on for a year, cyclosporin, and had done 5 rounds of Rituxan. She was preparing for the most challenging year so far.

As age 6 approaches I can only wonder what is in store for our little baby.

IVIG

Miss Haven had a full day of IVIG today. I heard she did excellent with her port again. Since she started feeling pain she has been more nervous about her port. She still doesn't feel "full" pain but definitely feels a little now. Still we have not seen her cry and has never had tears. But we can tell when she is sad.

After IVIG Haven is usually exhausted. She had a bit of energy when she got home but it didn't last. We started to watch the movie UP and by 6pm she was nodding off. I was able to keep her awake until about 7pm when she was finally allowed to crawl in to bed. If I put her in too early she'll have me up at 5am. She has been peacefully sleeping for a few hours now.

After IVIG she is always really cold with chills. I was laying on the couch and looked over and she had wrapped herself up! So cute. She will be pretty tired until Sunday....this is how she always is after IVIG. Luckily, she will be back to her normal self for Turkey Day! :)

Short and Sweet

Well - I had surgery on Monday morning so I've been pretty loaded up on drugs the past few days and not really able to stay awake long enough to write.



Haven is doing very well with her home schooling. Unfortunately I have not been awake when her teacher comes so I haven't been able to meet her yet. I have slept from 10am - 3pm every day this week. Since I am going back in to my doctor tomorrow I should be awake to meet her.

I spoke with Haven's doctor yesterday. She will receive the IVIG this week. I planned to go in on Friday with her but I'm not sure I can sit that long with my foot. I need the pain meds and to sit for 6 hours of IVIG might just be too much.

Her doctor has also contacted Kennedy Krieger to have Haven evaluated. He believes Haven's obsession with food due to ROHHAD has made a habit over the years. Since everything else has been affected so positively with the treatments and the only area that hasn't been affected is food/drink he wants her to see a psychologist and have her evaluated. The last time we went to the institute I wasn't very happy. But am willing to meet with them again and hear what they have to say. They may have tips to help us work with Haven.

We really are very excited with all the ROHHAD symptoms that have reversed with the treatments. She is completely in panties now which is awesome. It's one of the biggest positives we can actually see. She doesn't have any accidents or anything. She never has the temperature issues - before she would sit and sweat for no reason.

They checked Haven's growth hormone at her last appointment and due to my medication didn't even think to ask her doctor. I will decide by tomorrow evening if I will be going to the appointment. If not I will email her doctor all of my questions and he can review them with Kris. Once I have the appointment set up with Kennedy Krieger I will update with what they want to do.

Haven picks Nicodemus Annabelle (Nikki)

Well...you know it's hard to choose when they all look this cute. Three of them are boys and two of them are girls.

Haven went to see the puppies today and pick out her Nikki Deez. The other little girl is going to be name Luna.

It was a hard decision. Haven is also trying to learn how to hold them and play with them. She kept reminding us that this is her first puppy and she will learn. But she absolutely loves the puppy. She has a calendar that she marks down to the day she gets Nikki.

After playing and holding both girls Haven had the hard decision of picking who she would take home. It wasn't easy - both girls are absolutely adorable. The boys are so cute too and the play so funny.

Finally she made the decision and Nikki Deez was chosen. She picked the more wild of the two and the one that liked to nibble. She is so adorable. It's really hard to pick just one. But we can't wait for her to come home.

Haven put her necklace on Nikki and with help was able to hold her for a picture. Nikki and all the babies have grown quite a bit in the past 3 weeks.....so we stayed close to make sure everyone was comfy.

Nikki was crying a little when we put her back in the pen......but she'll be home with us soon! Love you Nikki!!!! Haven says she'll be thinking about you.

Thank you Karen for letting us come over to see all the babies...they are amazing!

You can see all of the photos from the morning HERE

1st Week of School.....and Nicodemus Annabelle

Haven has been doing excellent with her school. She has always loved to learn and would rather be doing workbooks than playing with toys. Although she does teach her babies (stuffed animals) their letters and numbers.

The teacher was over Tuesday - Thursday this week. Tuesday was an evaluation day with the teacher to find out where Haven is and what her curriculum should be. The teacher was amazed at how much she knew without being in school for over 2 years. Just because she's home or in a hospital doesn't mean we stopped teaching her. I was pushing her on 1st grade workbooks this summer.

Wednesday she got her school books and with the teacher she did the entire month of August in 3 hours. AWESOME! What the kids at the school took to learn in August she had it down. The teacher was amazed by her. They read stories and Haven even sang songs!!! We had a bit of homework which she had a blast doing with me.

Thursday was learning 5 more words and making flash cards. They did some math and more spelling and reading. Haven absolutely loved it. She has a lot of homework for the weekend. We did some last night and will do it all weekend to keep her mind going.

I never second guessed her on what she knows my fears have been social interaction with other kids and if they will make fun of her or pick on her. This is something I won't be able to handle.

But for now she is doing great and loving her school work.

Saturday she will go to see Nicodemus Annabelle or Nikki or Deez....She will get to put her necklace on the one she picks. I asked her how she was going to pick and she said "whichever one runs to me and wants to play is the one I'm taking". Should be fun - we'll post pictures of the puppies tomorrow evening!

Home school tomorrow

Well - we're excited and nervous but Haven starts her first day of home school tomorrow. A teacher from the district has been hired to be Haven's teacher for the year. She will come 3 days a week and will leave homework with Haven to do and turn in each day. We are excited but I think Haven is nervous. We worked on her sight words tonight and she was exhausted after an hour. Hopefully she will be able to handle a few hours each day.

Since doing all her treatments this year - Hi CY and High Dose Dexamethasone - she is unable to go to school because her low immune system. She can't be immunized nor can she get the flu shot. Leaving her too high risk being around other kids. So this is great for her and I don't have to worry about her being alone at a school.

Since Haven is showing excellent results for many of the ROHHAD symptoms she is now on every other Friday schedule with Oncology. Another exciting marker...as she had been seeing them 3 days a week. I don't have the results from her hormone testing yet but I'm sure it will be discussed on her next visit - November 20th. I've also put a call in to her Pulmonary doctor to schedule the next sleep study and to meet with him to check her over. They had wanted a lung function test before Hi CY but it all happened so quick we didn't get it done in time.

MRI of the tumor looked awesome! Everything is stable.

Barbie time

So she had so much fun playing barbies at the hospital that I bought her two with some clothes. I believe she stood here for about 2 hours playing. Just constantly changing the clothes on barbie and mix/matching outfits. The only issue is that mom is not good at buying barbies and the "beach" barbie is flat footed so she doesn't fit in the spiked high heels of the normal barbie!

lesson learned.....so now she wants to ask Santa for a bunch of barbie stuff.......I think we just became a girl! sorry daddy...it had to happen!

Hanging with Stryder

First I couldn't believe Haven played with Stryder Saturday night...got off the couch...played in another room.....now her Aunt Katie bought some moon sand for Stryder and we were hoping Haven would play. Katie did it. She got Haven outside and actually got her touching and playing with the sand.

Stryder loves when Haven plays with him but Haven is very particular about certain things. They had a lot of fun but Haven did have too many rules for a 2 year old to like. So he started doing things just to drive her crazy. It was hilarious.

I am so happy she played with him. She hasn't really been around kids since getting sick 2 years ago...we are slowly trying to get her to understand before putting her in a school setting next year.

They probably played for about an hour....most of that time they played by themselves together. I am so happy.

So active.....Ready for School

I am amazed every day at how active Haven has been. Saturday night she was running up and down the hall with Stryder - she played with him on the keyboard in the pink room - and just had a lot of fun. SHE HAS NEVER gotten off the couch when he comes over. She used to just ask him to sit and watch TV with her.

Saturday evening around 8pm I received another phone call from the school and Haven's teacher wants to come on Monday!!! So we were excited but all of the sudden I noticed that Haven was getting nervous. So I had to make it fun.

Sunday Haven and I got up and grabbed Aunt Katie and went shopping at Walmart for school supplies. Katie is going to be an elementary teacher and the school didn't give me any info on what she needs to do her stuff. So Aunt Katie helped us pick supplies. I got her a little locker and she meticulously placed each item where it needed to be. It's fun to watch her because she is so specific on where everything has to be.

She is very excited to start learning.

Red Velvet Cupcakes

Well...we hadn't celebrated Grandma's or Grandpa's October birthdays yet and Stryder was coming over for the night. I woke up and told Haven we had the best excuse to make cupcakes!!! She hasn't baked or cooked in a long time and she was EXCITED.

Here she is starting the cake mix.


mmmm......red velvet cupcakes. It actually looked kinda scary - I never made red cake before.

We've cooked the cupcakes in the little feet and now we're planning to mix colors in the icing! This is the fun part!

Mixing the colors...we made pink, lime, purple, and blue. Haven put so much blue in the blue that I'm very scared to eat it. I accidentally got a small bit in my mouth and it instantly turned my teeth and tongue blue!!!

PS: red velvet cake stains!

Final result....beautiful cupcakes in the feet sprinkled with love! yummy.....

More ROHHAD Children

It seems like about every two weeks I find another ROHHAD family. This time there are 2 new ones. They found my site I created on facebook for ROHHAD Syndrome and I was able to check her web site.

CLICK HERE for Twin Cin-City -- her child is currently with Dr. Weese-Mayer

The other lady's name is Trina - from Newfoundland.

I don't know much about them - I have only recently found them. But it's great to finally have a place where all of us can connect!!!!

Friday Oncology

Yes this is Miss Haven playing with barbies. Kris said she played for over 20 mins! I know I sound crazy but she never plays!

Haven met with Oncology today and I'm excited because it came back that she has lost a pound and has grown 1/2 an inch!!! This is awesome. In May she was about 1% on the growth chart. We did HiCY and she bumped up to 5%. Since the last Endo meeting she has grown more! We have been relaxed on her diet due to everything she has been through....so it will be back to 1000 calories again. She was probably at 1500.

We don't have anything to report on the MRI. Her tumor remains dormant and stable.

Haven did not do IVIG today. Her immune system has been kickin buns and staying at a great level so far. They did another test today so if it's low she'll do it next week.

On Nov. 20th she will be in Oncology by 7:30 to do hormone levels. Her growth hormone was low in May when we checked so this will show what has happened in 6 months. I'm excited to see it since all the treatments and she has grown.

Laundry

HA HA HA.....Haven happily helps mom with the laundry!