Let me begin by saying, this is a very special post. Had I written this post a week ago, I’d be writing different words right now, maybe a bit dejected; defeated.
Had I written this a few days ago, I’d be writing another set of different words, more hopeful, but still not knowing how to feel.
I’m glad I waited until today to write this. In the span of one week, our worlds were turned upside down, and then right side up again. I went through a whole list of emotions in 7 days. I cried; I smiled. I laughed; I wept. I didn’t want to go out to eat for my birthday because I didn’t feel like celebrating anything.
But today, I feel like cheering! I want to tell the whole world my great news!
But before I do that, let’s go back to last Friday, the day I felt defeated…
Evangeline’s Appointment at Yale Children’s Hospital
Friday, May 19th, at an appointment that my daughter’s pediatrician told me I might as well cancel because she was improving so much with physical therapy and “there are other children who need it (help) more,” the expert doctor at Yale told me my daughter had hypotonia (which we knew) and possibly Congenital Myopathy. In his words, “she will walk at 18-20 months or 2 years or she might not ever walk.” Cue the tears. He examined her and told me she had severe hypotonia (“She’s very floppy.” Those words that everyone has used: Floppy. I’m sick of hearing that as a descriptor for her.), more than most children, but that it wasn’t the worst case he’s ever seen. He basically upended my life. Here I was thinking, ok, let me take her just to see if she’s all right even though her pediatrician said she’s all right. But just in case… And then I get this news. “We will run some bloodwork on her, and based on that we will know if she will need a muscle biopsy and electro…”
Spaced out…. left the room at that point (in my mind that is). All I could think of was someone trying to stick a needle into her arm again and not being successful, and then them cutting her up to see if her nerves were working properly.
“…she will be asleep for both tests…”
But she’s only 1!!! Anesthesia already?!?!?!
He paused while I composed myself.
“If her bloodwork returns positive we will not do the muscle biopsy and instead will go a different route since we would know it’s something in her DNA.”
Oh Lord… this is too much information for me and I’m alone. My husband isn’t with me. My mom is outside with little Henry. I have no one by my side. My daughter’s playing on the bed, oblivious to the fact that we’re talking about her health. I had seen so many couples with their child(ren) outside. Now I understood why. You can’t go to these alone. You need someone else for support.
The appointment lasted about an hour. The doctor was super nice, but real with me. He didn’t sugarcoat anything. “She will lead a mildly normal life.”
“Mildly normal?” I asked. What’s “mildly normal”? Two days ago everything was great with Evangeline. She was much stronger than in previous weeks. Her physical therapy was progressing, and then this person tells me she will have a “mildly normal” life! What?! A thousand images spun through my mind. More than anything, I didn’t want my child to go through life suffering because she was different.
After I left the room I made a follow-up appointment for the muscle biopsy and waited for someone to do her bloodwork. We waited over two hours for bloodwork. My poor little girl. Luckily, this nurse was successful and though she took about 5 vials and one syringe of blood, she was efficient and fast. Evangeline wailed the whole time (they had to close the door), but her entry point healed very nicely and there was no bruising.
I drove home crying. I sat in my kitchen while my children ate, and cried. I went to my room and cried. When her pediatrician called a few hours later and asked how I was doing, I cried. I was defeated. Hubby Henry told me not to cry, to look at things from a different perspective. Despite what the doctor had said, she was improving! I told him tomorrow (Saturday) I would be a fighter again, but that day, I just didn’t have any energy left.
The weekend came and went and I was feeling better and more optimistic. My best friend mentioned that her cousin’s son had been slightly delayed as well and she had put him through a few free programs that helped him go from sitting to walking. Evangeline’s therapist had mentioned Birth to 3 to me a few weeks ago. One of my dad’s clients had mentioned it as well. On Monday, I filled out paperwork online to get Evangeline enrolled there.
Then something wonderful happened.
On Monday, after I sat Evangeline in her crib. She pulled herself to standing! She had never done this before and it was one of the questions the doctor at Yale asked me. I sat her down again and she pulled herself to standing again! I wanted to cry tears of joy!
On Wednesday, some of her test results came in so I made an appointment with her pediatrician so we could talk about the results after her therapy session. At the session, while her current therapist would be leaving that week, she met her new therapist, another sweet girl. I brought a letter from my daughter’s insurance saying she was eligible for therapy twice a week. They had sent this to me weeks ago, but at the time her therapist didn’t think she needed it. Now with the analysis from the Yale doc, I brought that letter and told her therapist I wanted sessions twice a week and they agreed. They were concerned about her visit with the Yale doc, but they were also overjoyed that she had pulled herself to standing.
After the therapy session, I went to see her pediatrician. I didn’t understand any of her test results, just that she fell within range for just about everything. Her pediatrician said she was fine, numbers-wise. She had put a call into the doc at Yale so they could discuss the results as well. I told her she pulled herself to standing and she was thrilled! That was great progress!
That evening she called me and relayed her talk with the Yale doc. He said it was still too early to come up with a definitive diagnosis and he would have to see all the test results. He also said not to think of a muscle biopsy as a bad thing, but more of as a definitive answer. Heart crushed just a bit. But her pediatrician told me, “Here’s what you should get out of all of this: she doesn’t have muscular dystrophy and that’s a good thing.” The Yale doc was an expert in muscular dystrophy she said. Before heading off to bed, hubby Henry was practicing walking with Evangeline and whereas before she didn’t know to move one foot in front of the other, this time she was moving her feet as if she were walking! This gave me hope!
Then came Thursday, another day of surprises!
Thursday’s News Whopper!
Thursday started out like any other. I sat Evangeline down in front of things so she could try and pull herself to standing. She did! When Daddy came home he started doing exercises with her and more walking
exercises. Like I told her therapists, “I don’t care if she crawls, as long as she walks!” I understand that crawling is important because it builds upper body strength, but I want my little girl to be able to walk one day! Then around 5 p.m. Daddy placed her in her crib. She immediately pulled herself to standing, and since it was time for her to feed, Daddy said, “Put the bottle near her and let’s see if she’ll walk toward it.” So I placed her bottle on top of the changing table that is part of the crib and we waited. She was all smiles and distracted by her big brother who was playing a Chuck E. Cheese game on my iPhone. Then, using the crib’s railing, she started walking toward the milk bottle!
Yes!! It was maybe 2-3 feet of distance, but SHE DID IT! BY HERSELF! I was so overjoyed, I think I cried tears of happiness! A week ago I was told she might not walk and here she is walking! I can’t even describe how I felt inside. I thanked and praised God immediately! I had prayed nonstop every night and he answered my prayer! My little girl did it! Of course, she still has more to go, but this is HUGE progress! Now I KNOW she will succeed in everything she chooses to do! She’s such a fighter! My little heroine! Superheroine!
On Friday more tests results came in and I gave her pediatrician a call to discuss. At the end, I gave her the big news. To say she was overjoyed is an understatement. She thanked me for sharing such wonderful news with her. Her therapist is leaving this week and unfortunately, I’m not able to tell her she walked at her next session, but I did give her this blog’s website so that she could check up on Evangeline’s progress. When she reads this I know she will be so happy for her.
And this marks the end of a remarkable week for us. I have this new outlook on Evangeline’s future and I’m so proud of my little girl!
I know there are other parents and caregivers out there who have gone through similar situations and experiences. I’d love it if you would share below what you’ve experienced, learned, and what the outcome has been!