Eight Crazy Months

Mini is 8 months old already. It feels like I just brought her home and was a basket case trying to figure out how to be a new mommy of 2 girls. Katelyn and I have been to see a lot of doctors in the past 2 months. She has seen a Physical Therapist, Pediatric Neurologist, Nutritionist, Ophthalmologist, Nurse Practitioner and a Plastic Surgeon. She had a full MRI done on her spine and brain. She has been seen by a vision therapist and a neuro-development specialist. Here's what we have found out from the mountains of doctors. So far Katelyn is just slightly behind in her development for her adjusted age which is 5and a half months. She is blowing raspberries and laughing and playing with toys more.She has some trouble with focus but she is getting better and she has even realized that if I go away she doesn't like it and she cries. She loves to play peek-a-boo and any kind of singing.

The day we went for her MRI was a bit rough but we made it through. We had to  be at Primary Children's at 7am. Katie hadn't eaten since 1am and was tired and hungry. The hardest part was when they had to put in her IV it took 2 tries and all 3 of us to hold Katie down. Let me tell you she is one strong baby girl. She can kick her way out of a strong swaddle in no time flat. It took almost 2 hours to complete the scan and I was so happy to hold her and feed her a bottle once it was over. We got the results a few days later. Katelyn has what looks like a tethered spinal cord and we will see a Pediatric Neurosurgeon on the 25th to see if she needs surgery to repair it or not. She also has something called Periventricular Leukomalasia. From what I understand it is a brain injury that causes developmental delay and muscle tightness.One of the nurses in the NICU said it is almost like she might have had a stroke sometime during her fetal development. It was a little tough to hear that my baby was hurting while she was inside of me and I couldn't do anything to help her.  I haven't seen too many signs of the damage other than her tight muscle tone. I have become used to the idea that we may be in for a lot of rehabilitation and therapy but anything for my little miracle. Colt's worst fear for her is that she will be severely handicapped and she will have a tough life, right now mine is that she will never learn how to sit up or rollover. I see great improvement in her everyday and I am trying my best to be optimistic.

These are views of Mini's goofy shaped noggin. She has been diagnosed with plagiocephaly or flat head. We tried our best to round her out with positioning but she favors her right side and always turns that direction. Dr Ley, a pediatric plastic surgeon gave us a prescription for a helmet to help re-shape her head. We are waiting for approval from Shields, a prosthetic company here in Utah. Here is their website and a look at what Katie will go through. Her case is mild compared to others but I want her to have a pretty head even though some might say it's dumb because someday she'll have hair that will grow and cover it up.

Overall we are happy with the progress Katelyn has made over the past few months. Her NICU nurses would be so proud to see how much she has gained and how her sweet personality has grown. She is still that sassy little girl who demands attention and loves her cuddle time. She is starting to want to sit up and be part of the conversation when we are together as a family. She tolerates the dog licking her and Emma practically laying on her and kissing her to pieces. It has been wonderful to have her home and I am so excited for Halloween even though we have yet to find a costume for her.