Our big girl is getting bigger. When I attempted to put her in a 3 to 6 month onesie and couldn’t snap it, I threw in the towel and swapped her clothes out. My four month old is now sporting 6 to 9 month clothes and rocking them out with her long torso! Her naps are ever so slowly getting in to a routine. Of course, our schedules have been all over the place so she hasn’t really had much time at home to settle in to a good nap routine. We’ll get there one day though. She had her four month check up and passed it like a champ. Her development is on target for her age. Still not rolling consistently but she loves to roll side to side so we are hoping any day now that she’ll start rolling to get from A to B. Some NF kids tend to have macrocephaly (fancy term for a big head and small body). However, Emmie is just plain big in general. Or rather big for an NF baby (they have their own growth chart that the NF clinic uses and she is so big she is off of it) and upper average for all the other folks.
Here’s her stats (stats are based on a normal growth chart):
15 lbs 8 oz (86%)
26″ long (96%)
16 5/8″ head (81%)
I’ve decided to document all that Emmie is going through more for my sake than anything else. I want to remember both in pictures and in words how God is working in Emmie’s life and in our lives I debated awhile about doing this but then after talking to another mom who has walked a very similar path, I felt like I needed to make sure I wrote out and took pictures and journaled her life. I want to share it here because this is the best way for me to record and look back on what our lives have been like. And, like it or not, NF is now a big part of our lives.
A lot has happened this past month so I thought I would try and get this up to date. She had her neurologist appointment on September 11th at 7 in the morning. Do you want to know what big city traffic looks like at 6:45 a.m.? You don’t. Trust me. We thought we wouldn’t have to deal with rush hour that early. Just believe me when I say we were wrong.
We made it eventually. Emmie’s neurologist is the first NF neurology specialist at Emory. We’ve heard nothing but good things about Dr. W and the next time Emmie goes to see him, I’ll try and make sure to get a picture. He was great with her and she was all smiles with him. Developmentally, she is on target so the plexiform she has on the back of her neck is not causing any issues right now. Dr. W laid out some things to look for that might mean action is needed immediately and also discussed our next steps. One of them was that he needed a better MRI of her cervical spine (the neck) to get good measurements on the plexiform as well as to see if we could track any growth and to know what type of surgeon might need to be consulted.
We asked that a small miracle be performed and for her to be scheduled for the MRI while we were in town (possibly that Friday). God showed out and we were able to get it done THAT day. It was a huge blessing and little miss did amazing having to fast during the day.
Waiting to see Dr. W and enjoying playing on the floor.
Let the fasting begin! I look forward to several years from now when all we have to do is show up in the afternoon and she watches a movie while they take the pictures. But for now…we fast.
Almost time for the IV stick and she started screaming every time she looked at me. At that point I was the mean mama denying her what she really, really wanted. Mark helped her pass the time by playing with her.
Her awesome nurse got in on the distraction by finding a balloon.
Baby veins are so finicky and tiny that getting an IV in is very hard. This time, it took two sticks. She cried but calmed down a tad when I started playing hymns from my phone.
I thought that it was tough getting through the first MRI and that subsequent ones would be easier. I was so wrong. It was just as tough. Once we left her asleep, it got a bit easier but around the one hour mark we got very anxious for our baby back. Not too long after, she appeared and I grabbed her up as fast as I could.
Mama’s arms and a sweet sleeping baby. It took her awhile for the meds to wear off but after a good nursing session we headed back to pick up the crew from the grandparents’ house.
My loopy baby.
By the time we got back to our house, she was all smiles and back to her fun self.
The MRI showed extremely little growth from what they could tell comparing the August MRI. Dr. W suggested a six month repeat MRI and appointment with him. It also appears that the plexiform is growing out at the neck and not around the spinal cord. This is extremely good news!
However, since it is easier to remove most of the plexiforms when they are smaller, we will be consulting with a neurosurgeon to get his recommendations. We had read that when a plexiform is removed it will grow back faster and bigger. This is not true according to Dr. W. Each plexiform neurofibroma will grow at its own rate and will typically follow a curve upward. That means that whether you remove some or none it will continue to grow how it will continue to grow. We are content with waiting until after her six month check up to remove what we can. She’ll be older, bigger, stronger at that time. This is all new territory for us, so for now, we won’t be able to make any decisions until she is seen by a neurosurgeon and we have prayed about it.
Prayer Request:
1. That the tumor will continue to grow out at the neck and not around the spinal cord area.
2. For an appointment soon with the neurosurgeon
3. Wisdom as we weigh the risks and benefits of any and all procedures for Emmie’s care.
4. Strength to see God’s hand in all of this.
This is already so long. I really want to share my heart but feel it might need to wait for it’s own post. We ache and our heart breaks for all Emmie is dealing with at this time. And some days the struggle is really hard. The past two weeks have been “normal” weeks of school and church and playing with neighbors and friends. I have soaked up every second of it. That’s enough for now. I promise I will share more later.
