I sit here taking a rest from all the things that need to get done… You all know as mothers that list is never ending.
Keith and I have been very quiet about our journey as parents thus far and now we have decided that sharing our story may help a few others. I warn you we will continue to share until we show other parents that each journey is hard and unique. Sharing is something that is hard for me personally. I prefer to be private mainly because I fear judgement from others. However, with the help of those I love they have showed me that sharing helps me gain support and show others that they are not alone in their own battles. So please be kind as I share and don’t judge or spread rumors about our journey.
Some know our son Theodore has had some issues, but most of you do not know to what extent. When he was born I told myself that the struggles were me and that I was the one that was having issues dealing with parenthood. Things were hard, really hard….
Now nine months later, I have learned that it wasn’t me or postpartum depression but real health issues with our son.
It started with failure to thrive( aka severe weight loss and exhaustion) and I recognized his stomach was miss-shaped and he was throwing up… ALOT. His pediatrician kept telling us nothing was wrong and I was just being a new mom and worrying too much……so pretty much saying we are CRAZY!!!
(Now mind you, my mother has ran a daycare my entire life and I am the middle of five children and felt like I knew babies……but this comment made me feel like I was wrong! )
It wasn’t until we were away for the weekend with my family that Theodore developed a large groin hernia, we rushed to 2 different emergency rooms where we ended up with no help but coming back to NC where we were referred to a pediatric surgeon and had an appointment two weeks later.
At the pediatric surgeon, she recognized two groin hernias and also recognized his odd shaped abdomen. She requested an immediate ultrasound. A day later we had the ultrasound and three hours after the ultrasound we were called to have emergency surgery. He had what is called pyloric stenosis. This is where the small intestine from the stomach is too thick…. Well our son’s was CLOSED. He was getting absolutely no nutrition( which is why he had lost 1.5lbs)… So it was time to fix it all.
Surgery went great and we were out within two days, but something was still not right. He was still screaming, getting sick and not eating. We went back to the surgeon she said everything looked great but believed he had GERD and acid reflux. So we were prescribed medicine and sent to the pediatrician.
(…..So at two and a half months I was breaking And concerned that we were killing our child. At this point he was still down almost two pounds from his birth weight and I seen no light….)
Once, we seen the pediatrician Theodore was prescribed medicine for acid reflux and GERD and was diagnosed with milk protein allergy…. So we were to give him a VERY expensive special formula called alimentum. This combination with many many MAAAANY changes in the dose of his medicine finally worked and he eventually began to gain weight.
We are in the clear right?????
Theodore still wasn’t reaching his developmental milestones, his eyesight and the shaking of his eyes was not getting better. BUT his pediatrician told us he was doing fine (right) and she seen no abnormalities. So we took the reigns and scheduled an eye appointment while we were home for the holidays. We chose a facility I have been going to since I was a child, because hopefully they would give us answers.
At the appointment they referred us to a pediatric neurological opthomologist with Riley Children’s Hospital in Indianapolis( where I am from). She then noticed his lack of eyesight and FINALLY referred us to a genetic neurologist who would give us the answers!!!!
We finally we’re seeing answers and people caring for our son.
Two months later we had an appointment at Payton Manning Children’s Hospital with Dr. Escobar( this man is the best).
The appointment was nothing I was expecting, it was more. It was everything we needed and more. It was an answer from God.
During the appointment they took our family history ….back four generations and asked all questions possible. They recorded every sneeze, freckle, wrinkle,cough, and temperature that Theodore had in his short life. Then we waited for the doctor………
20 minutes later the Doc. Walked in grabbed Theodore from my mom and started talking to him and his genetic counselor. He ran through the tippy top of his head to the very end of his toes.
Then after he was finished Dr. Escobar turned to us still snuggling Theodore and said “something is wrong with your son” because of xyz….. He continued to explain to us that he would do whatever he could to find the source and the cause and from there we would create a plan.
I began to bawl, and my mom and my aunt began to bawl. I then proceeded to tell him I was sooooo happy. Not happy because something is wrong with our child, but happy because FINALLY someone sees what we have been witnessing. FINALLY someone understands that I am not crazy and that we need help. FINALLY we are going to get answers.
The docotor agreed and told me that it would take time and that the journey was going to be hard. I told him we were ready.
Scans, blood work, days of worrying and tests later we have made some discoveries. Theodore has Nystagmus, has to wear glasses, has started PT, OT, eye therapy and has to meet with and audiologist. He has low muscle tone, and also is missing part of his seventh chromosome ( this is so rare it is like finding a four leaf clover).
As we speak they are connecting all the puzzle pieces. They are wanting to see if the things that are wrong with him connect to the seventh chromosome or are another genetic and neurological issue…… More answers to come!!!
Through this journey we have blamed ourselves, stressed about him, prayed for more days, and answers, stressed about his quality of life, cried many many MANY tears and have somewhat lost our minds.
Sometimes this journey has been extremely lonely and confusing. We have lost our minds, had to be separated and have felt miserable/hopeless.
However, recently we have come to conclusion that God chose US to be his parents. He knew that we needed this child, he knew we could handle the journey. Missing a seventh chromosome is not genetically passed down but it is a mutation in the chromosomal strand.
This makes Theodore “supernatural” and it shows us that he has a purpose in our lives He is very smart, and strong.. Although not physically. We pray everyday he will be like every other “normal” child and see confirmation through the doctors. However, the path may be sticky.
We don’t know where we will be in three week, three months or three years, but we do strive, push and hope for the best.
When you have children you think of all the things you want in a child, but you rarely think of all the things that you need in a child. Theodore is what we needed, he has taught us more than we will ever know and will continue to teach us. I know he has shown us what we can do and how we can be better. We are thankful to be his parents.
With the journey just beginning we know we can only look forward to what else God has in store for us. We pray everyday for our Son…….and our sanity. But we have to Report to Duty, and be the BEST parents we can and push him in reaching his own goals.
So now that you have read this don’t assume or spread rumors, but if you have questions just ask us. As I said before we will now be sharing this journey, because we know there are others out their that will have similar circumstances.
Please Pray for us, send good vibes our way or just think of us and others from time to time. Because we need all we can get!!
Until next time!
Reporting to Duty