So the last time we left off was the day George came home. It’s been 2 years, 7 months, 3 weeks and 1 day since that day. George has grown in a smart, beautiful and most importantly HEALTHY boy.

The past 2 years, 7 months, 3 weeks and 1 day has not been easy. People often assume that once NICU babies are discharged from the hospital they are in the clear. On the contrary, it becomes harder for the parents because now their baby is no longer hooked up to a machine that is monitoring oxygen or heart rate. If you are a parent, you know the sleepless nights waking up to make sure your baby is okay and breathing. Richard and I purchased a sock called an Owlet that monitored George’s oxygen and heart rate while he was sleeping. We were very fortunate to never experience his levels going below normal range. (SOMEONE CUT US A BREAK!!)

As you may remember, George was struggling to keep up his glucose levels and he was far from being cleared from hyperinsulimia. Upon being discharged, we were instructed to ensure that George does not go over 6 hours without eating. We were also required to check his glucose level before every feed and ensure it would stay above 70. For those that don’t know how this is done, there is a little machine that has a very fine needle. The machine comes with another device that is used to measure the glucose level once you have pricked and taken a blood sample. We pricked George’s foot for 6 months. I can reassure you every reading was a mini panic attack because you never know what you were going to get with George.

At 4 months, George went on a plane for the first time. Richard and I were so worried, but decided we needed to take a chance and have faith that everything would go smoothly. And it did! We made it to the UK with no issues and we enjoyed our 2.5 weeks there. George adjusted very well and had lots of hugs and giggles.

At 6 months, we were scheduled an overnight stay at the Children’s Hospital of Philadelphia. CHOP has one of the world’s best endocrinologists, specializing in Hyperinsulimia. The purpose of the stay was for George to complete a fast overnight. He was to go 24 hours without food and monitor how his body reacts. During this time, geneticists came in to observe George and they asked us if they could test him for two conditions. The first was Beckwith-Wiedemann and the second Sotos syndrome. He was tested for these conditions due to his size. If you have followed our journey, then you know that George is overall just a big boy. This has always come up as a question.

Two months later, we received results and the results at CHOP were the following. George does not have Beckwith-Wiedemann. George does not have Sotos syndrome. George does not have hyperinsulimia. He was able to fast 12+ hours and doctors said they had no reason to continue poking around. Richard and I were so over the moon (ANOTHER BREAK!!)

There had been so many special days that we always felt so hesitant because of that question mark. We finally felt like we could enjoy our little boy without there always being a question mark when we spoke to a doctor. He started to grow up and started meeting his milestones. He was sitting up, rolling over, standing, crawling, cruising, and babbling. As mentioned, George is a big boy, so his head size made it very hard for him to sit up and roll over, but he was able to figure it out.

               

By 11 months, we had traveled again – to Toronto this time. Richard and I truly started to enjoy the holidays – Halloween and Thanksgiving. And a week before George’s 1^st birthday, we went on our first family vacation. Just the three of us. For a whole week, we enjoyed the beautiful weather in Los Cabos. George has always been such a happy boy and he was in his element – eating, sleeping and hanging by the pool.

             

We had a big party to celebrate his 1^st birthday, but unfortunately George was becoming very ill. The next day, we had to take him to the emergency room where he was hospitalized for 3 days due to upper respiratory issues. George was considered preemie, despite his size. Due to this, he wasn’t 100% ready to come out and one of the things that he struggled was laryngomalacia. This is just a floppy piece of tissue that hangs around in the larynx and causes a harsh sound when breathing in. Richard and I took George to see the ENT who saw him in the NICU. He reassured us that the majority of children outgrow this, but it didn’t help when he was sick. Christmas rolled around and it was getting colder. George developed ear infections and was on a nebulizer because of the upper respiratory issues. This became the norm for us.

                         

George grew older and eventually we decided it was time he went to daycare. He was in 3 days a week and stayed home with me for 2 days. We continued to travel and visit family and while in Portland, George took his first steps. George was always late at meeting his milestones, but we were always told he is a boy and boys are slower than girls, so give him time.

             

Richard and I had made an agreement that if we felt that George didn’t catch up to meeting milestones by 15 months, we would contact Early Intervention. That is exactly what we did and it was the best decision ever. Early Intervention in itself has been a journey, but we have been so blessed to have been assigned incredible therapists on top of having a fantastic teacher at school. Everyone was attending to George so well to make sure his needs were met. For a long time, Richard and I would always discuss whether of we thought George displayed signs of autism. Although we had an appointment scheduled with a developmental pediatrician, we decided to give him more time to develop.

     

Bear with me, I know this is a long post! A lot has happened in 2.5 years.

Eventually, speech started to become a concern. Early intervention reported that his speech was delayed; however there was a large gap between expressive and receptive. This meant that George was understanding and processing everything being said to him, but he was struggling to express himself. This was difficult for us because we were told that a gap this large is really unheard of (no surprise there).

George started receiving services for Speech via Early Intervention in February of 2020. The only reason why it was started at this time was because his therapists wanted to make sure that George was imitating physical actions and making excellent eye contact prior to starting speech. I took it upon myself to get another evaluation for speech development at Hackensack University Medical Center, where similar findings were reported; language delay which required speech therapy.

Shortly after starting services, George became sick and I had to pull him out of school for a few days. And then COVID! I will not bore you with all of that stuff because honestly, nothing interesting happened. COVID has been so difficult for us as George was not receiving therapy for a few months. Keeping a kid interested via telehealth is not an easy task.

We started sessions back up end of May and George definitely had his favorite activities and therapists. He would become very upset when he would see the speech therapist and we think it was just getting to a point of frustration for him. Of course, this was extremely difficult for us to navigate because it was the biggest concern we had. George is communicating with sign language and very simple words, as well as guiding us and pointing to what he wants.

July finally rolled around and it was time for George’s appointment with the developmental pediatrician. By this point, George is 30 months old or 2.5 years old; for those who hate the whole months thing. These appointments are always so long and tough because we have to go through George’s entire medical history and it is almost as though we are reliving it. Richard is still definitely the stronger one out of the two of us and he is always on point in making sure I keep my cool and don’t burst into tears. We told the doctor that George’s cardiologist is still monitoring him annually for his heart abnormality and expressed our concerns with speech. The second half of the appointment is the doctor playing with George and asking him to do specific tasks. I teared up during the play session as I watched George transition so smoothly into new tasks and activities. At the end, the doctor reassured us that George is such a sweet and happy boy. He spoke so highly of him and asked us whether we brought him in because we thought he was displaying signs of autism. Richard and I gulped and were completely honest. We told the doctor that at one point we were so sure that he was showing some signs, but the doctor continued to reassure us that George displays zero signs of autism. He proceeded to explain that George played well, adapted to changes very easily, transitioned to different activities and responded to his name and directions well. He even said that cognitively George is at 36 months. The doctor told us to keep an eye out for ADHD as George does seem to get bored with certain things and gets distracted easily.  Lastly, he said there is definitely a delay with speech and suggested that we continue with speech therapy. This was not news to us, but overall we were so thrilled with the outcome.

I started becoming really impatient and upset in seeing that George wasn’t progressing with his current speech therapist. I would break down privately and Richard would see how it was slowly weighing me down. I decided to stop services with Early Intervention because I didn’t want George to be turned off by speech therapy. Early intervention decided to assign me a different therapist and after a conversation, she told me that she didn’t feel qualified to help with George’s need. I had no words. There were so many times where I felt so defeated and helpless. I felt like such an awful mother. Like I didn’t know what was best for my baby or I couldn’t help him. It consumed me entirely. But this only made me stronger, so I told Richard I was making an executive decision and refusing services from Early Intervention. At this point, I started digging deep into Oral Myofunctional Therapy. I had no idea that this was a thing, but the specialists are so far and few in between. In mid-August, I scheduled an appointment and I felt so let down by the entire process and just knew in my gut that I would not want to move forward with their services. It seemed like it was just business for them, so that same night I came across another therapist, Maureen Harper. I saw her picture and I know they say “Don’t judge a book by it’s cover,” but I just KNEW that she would be the woman to help my little boy. I called her and she scheduled us in the next day. I was so thrilled to see her and finally meet her. Richard was a bit skeptical, but he has always supported me. After meeting Maureen, our lives completely changed. In the short 3.5 weeks that George has been seeing her, he is sticking his tongue out and blowing. These were things that were so challenging for him and now he is able to do them; however there is a big piece that every single person has missed. As I had mentioned, George had seen an ENT 3 times in his life. All 3 times, I asked if George had a tongue tie. These run in my family and my sister had the surgery when she was 2 years old because she struggled to eat. The difference with George is that no one ever caught it because he was able to feed as an infant and eat solids as a toddler. So here we are, Maureen told us that George is not only tongue tied, but also lip tied and it could be affecting his speech. After prepping us and George for his procedure, we are ready to take on this new journey and are hopeful that George will be able to find his words to communicate with the world!