Mackenzie Walsh Benefit
On Nov. 20, 2012, Mackenzie Walsh arrived in this world 13 weeks early. Just 12 inches long and weighing 1 lb. 4 oz., she spent six months in the NICU. Of that, 60 days was spent on a ventilator, which has lead to chronic lung disease. Today she is on oxygen full time. Mackenzie was also born with bilateral congenital glaucoma, a very rare birth defect. She had four surgeries while in the NICU; three eye surgeries and an inguinal hernia surgery. She does not have vision in her left eye. Her right eye has remained stable due to the eye drop medication she is on three times a day. She needs two more eye surgeries soon, only to be followed by a lifetime of more.
Mackenzie now weighs just a little over 14 lbs, and is getting LONG (27.5 inches)! She's almost on the growth chart for her length (as an 11 month old, which is her corrected age). Also, she has five teeth, and I see two more approaching. Teething is AWFUL!!
Her eyes continue to remain stable. We go back for a pressure check in March....I'm feeling very apprehensive for Mack's next eye surgery. I am part of a congenital glaucoma group on facebook, and have been reading lots about different surgeries and options. I've heard about a lot of unsuccessful surgeries, infections, etc. Eyes are so sensitive....I will continue to remain positive and pray to St. Lucy.
Physical therapy has been going really well...Mack is ALMOST crawling....her arms are pretty weak because she missed out on tummy time while in the NICU, so we are working on strengthening. She will be so much happier when she starts to crawl....but I've been told to WATCH OUT, ha!
She is finally starting to eat solids....like pureed baby foods. I've found that she likes fruity things, and she likes eating off a giant adult spoon...hahah she is a goof ball!
SOME GOOD NEWS: My dear friend from high school, Christa Thieme's son (age, 8 months), Charlie has finally finished chemotherapy. He had retinoblastoma (eye cancer) and has gotten his port out. They are very blessed and a wonderful family!
Thanks all for following Mack's story! We LOVE YOU ALL!
Mackenzie can now be off oxygen any time she's awake. She has to have it on for naps and bed time. Also, we're finding she needs it on during anything strenuous like jumping in her jumper or else she'll cough and choke. Having it off has made such a huge difference for us. It's easier to carry her around the house and she's happier! Hopefully come spring we'll be done with the oxygen for good!
Mackenzie has physical therapy twice a week and she's been doing really well. She can't crawl yet, but she's doing great with sitting up and is starting to pivot around. She also rolls all over the place and needs to be watched non-stop!
With cold and flu season upon us, we can't take her anywhere and we have to be careful with who we have over the house. We did take her to a tree farm to get our Christmas tree and she loved it! She was so smiley and silly!! We can't wait for spring so she can be around family and we can take her places. She only goes out of the house for doctor appointments.
At our last eye doctor appointment, the ophthalmologist was extremely happy with her pressures. Mackenzie is on 10 eye drops a day, and they are keeping her pressures stable. Two eye surgeries are planned for April, as well as tubes in her ears. Hopefully with the eye surgery in April, Mackenzie can have a break for a few months (She's already had three eye surgeries). With glaucoma, the pressure rises and surgery is necessary in order to prevent damage to the optic nerve. Unfortunately there is no cure for this disease, just surgery and eye drops to help relieve pressure. Mackenzie will most likely be having three to four surgeries a year for the foreseeable future.
Lastly, Dave and I want to thank you again for following Mackenzie's story and supporting us through this difficult first year. This means the world to us! Her local benefit was a great success and and we will be using the funding for future cosmetic surgeries and corrective equipment.
Wow! Mackenzie is one! And we all survived! How did we make it through this year?!!? I really don't know how. This was the hardest most difficult journey our family has ever gone through. I am forever changed by this mighty little girl. As a good friend said, "she has been put on this earth for a reason." For her birthday, we are face-timing with family and opening presents. There will be NO cake eating or smashing for her. I'm always so nervous about her choking.
Medically, Mackenzie is doing great! She got her first synagis shot (an RSV shot) on Friday and did well. We also went to the ophthalmologist and her eye pressures are the lowest they've ever been. Still not normal, but acceptable and we don't have an appointment for four months! Whoa! We used to see our doctor once a week in the NICU for WEEKS. Two eye surgeries are planned for the spring as well as ear tubes.
As the holidays approach we are getting more and more excited! It's so fun with a baby around! We won't be leaving the house or participate in any family parties, but will be excited to start our own holiday traditions. And again we'll FaceTime family to get their Mackenzie fix :).