1st birthday

Today we celebrated Noelle's birthday with this amazing group of people. Together they planned a fun afternoon for our family. They gifted Noelle the best gift of all... The gift of hearing! They funded her baha hearing device and were so warm and welcoming and supportive of our family. Thank you to this wonderful group of people for blessing our lives.

1 year old

As Noelle's first birthday is quickly approaching it has caused me to reflect on everything she has accomplished in a year. One year ago I was honestly terrified to have Noelle. I secretly wanted to stay pregnant forever, if anyone has been around me when I'm pregnant knows that pregnancy is not something I do well, I typically count down the days...with Noelle's pregnancy I was kinda wanting time to go backward or at least stand still.

When we were first given the wolf-hirschhorn diagnosis we were told that when she was born anything could happen. She might be fine and go home after a few days, she may stay several months in NICU or a Mom's worst nightmare... She may not be born alive. We tried to go into this with a positive outlook and assured ourselves that God was in control and whatever was supposed to happen would. I silently prayed all would go well and we would be able to enjoy a sweet miracle child.

Well God heard our prayers and honored our wishes. Noelle has accomplished so much. She is still working on her head control, but she is rolling occasionally from tummy to back and back to tummy. She smiles. Has laughed (although it was only once we are hopeful it will happen again and be more of a regular occurrence). She is finding her own ways of communicating with us and it is so much fun to watch her and learn all her different cues. We continue to enjoy each day with her and pray her time with us will be lengthy. She is such a sweet, happy, social, and cute kid.

The 1 year mark is a HUGE milestone. We have survived as a family on our own without family living close by to help out (it has not been easy at all, it may have been filled with some fits and tears but we did it!) We pray Noelle will
make it through this next year, many (35%) 4p- kids pass by their 2nd birthday and we hope Noelle isn't among that 35%, we just need to keep her healthy and keep the seizures under control and hope nothing new or complicated pops up.

3 months old

How did 3 months already go by? At three months her sisters are trying to teach her how to play cards. This little one has been such a blessing in our lives. She has kept us very busy and taught us more than one could imagine.

At 3 months old Noelle is...

• Trying to smile
• Still wakes several times a night
• Weighs 4 pounds! (Finally!) her nurse and I may have jumped with joy when we saw the scale.
• Has had 2 surgeries
• Is seeing 12 different doctors/specialists
• Been to 48 appointments (86 if you count all the appointments I had to go to while I was pregnant with her) I wish this number of appointments was a joke. No wonder I feel so over whelmed and can't keep up with ANYTHING.
• Spent 23 days in NICU (21 days after birth and 2 days post eye surgery at two months old)
• Has stollen the heart's of many

I am amazed by Noelle's sweet demeanor and precious personality. We sure love this little thing!

Dolls

Daily I am greeted with shocking moments. Moments that stop me in my tracks and make me panic. Until I realize that there is a doll laying next to Noelle. Sometimes the doll is tenderly placed next to Noelle, other times the doll is upside down suffocated with blankets with only her feet exposed. Many times I will find a doll in the car seat, swing, or bed and I'm struck with fear as I try to figure out who and how Noelle was moved from one place to the other, until I realize it's just a doll.

A big thanks to Sadie and Hazel for keeping me on my toes... Even if one is broken.

4 ounces

This wee one has been gaining weight. Last week she increased 2 ounces and this week she increased another 2 ounces! She is setting weight gaining records! She also go some blood work done today for her kidneys. Stay tuned for info on her kidney status. We are praying the have grown and are functioning better.

Accomplishing goals

We have so many appts and weight checks with Noelle. The doctors are following her progress closely. Each week we hope for 1 ounce of weight gain. Many weeks we have no gain, some loss, or on occasion we see an increase.

With WHS these kids will never be the same weight or size as an average baby. They have their own growth chart. At 12 month old WHS baby is 8-14 pounds.

This past week we saw Noelle's biggest weight gain ever. She gained 2 ounces! She is almost to 4 pounds! 3 pounds 14 ounces, hoping for another 2 ounce gain this week!

Neurology

With WHS over 90% of kids experience seizures, this has been the one thing that I have had the hardest time with. There are so many types of seizures, some fast and mild and some are long and hard. Since Noelle was born I have been carefully watching her every move, questioning twitches and hoping I wouldn't miss an "episode".



I have now seen a couple of neurologists, the first was very passive and told me not to worry about seizures unless it was a grand maul lasting longer than 2-3 minutes. As a mom this didn't sit well with me. If my child is having short mild episodes the longer I don't treat those the more likely the seizures could escelate into something much worse. I left the first appointment angry, disappointed, furious. This doctor acted like seizures were no big deal especially in a child with other obstacles and health issues.



On Friday we decided to take a trip to LA area to see another pediatric neurologist, she was awesome and made up for the terrible experience we had at the previous neurology appointment. She went over what to do, what to look for, non medical/natural treatment, how seizures occur and how they effect the brain and child. All these things were so important for us to hear and she answered all my questions and more!



We have no proof at this time of seizures, most WHS kids have fever induced seizures, so we hope to keep her fever free as long as possible and hope to not have to deal with seizures for a while if at all. If we suspect seizures and they are reoccurring then we will begin to medicate and do tests. We would be lucky if this was something we could avoid, so we will cross our fingers we can keep this precious little one seizure free!