Sorry it has been so long since my last update. February was such a super busy month for Joey. I suppose this is because it was his first birthday and everyone needed to check up on him. So this update will really be a detailed accounting of Joey’s progress, doctor’s reports and potential needs for the future. I know that so many of you have been keeping up with him and praying for him and I appreciate that from the bottom of my heart.
As I write this, I am in the waiting room of my specialty OB, waiting to get a check-up on Baby Girl. There are MANY people ahead of me in line so this may be a very long wait but I am hoping it won’t be as I have an appointment with my regular OB in about 2 hours to check for pre-term labor. I am at the point where I have an appointment every 2 weeks now for this purpose. Since the boys were born at 25 weeks, I didn’t quite make it this far along last time so all of this is still new. I was just chatting with another mother to be and we both agreed that at this point in our pregnancy, everything is exhausting. Getting out the car and squeezing between the two cars alone was an interesting picture, one I’m sure people entering the mall parking lot next to the building I’m entering probably found amusing. It’s ok. I feel so ecstatic to be this far along…here at 29 weeks. Everything changes in the third trimester. The survival rate for early birth goes up to 90%. And the complications that my sweet boys had to go through for 5 months in the hospital and Joey will have to endure his entire life decrease dramatically. It amazes me and saddens me at the same time that 4 weeks make such a difference. If only I could have held those boys for 4 more weeks…lots of if’s.
So I will start with Joey’s therapy. He is currently receiving physical therapy, occupational therapy and visual therapy. PT and OT are through ECI and VT is through the school district we live in. I LOVE his developmental specialist (who also does the OT). She seems to also be somewhat therapeutic for me as talking about all of Joey’s issues and growth and development relieve a lot of stress. Joey works very hard for her and I am so proud of him. She teaches me the exercises to complete and we work on this every day as she only sees Joey once a week. She does lots of exercises to help build his arm, trunk and leg strength and although it looks like nothing, it is really hard for a little baby and by the end of it, he is tuckered out! He is now able to prop sit (sitting while using his arms as props) and he can also balance on all fours for a small amount of time. He gets pretty tired though and will slowly trickle down to his belly. We were working on rolling from his side to his back for so long and he has completely mastered that skill and is now flipping over to his back, not every time, but often without help.
He loves to work on his tactile skills and is very good at handling objects, sometimes a little wildly, but he does use his fingers well and holds things tightly without dropping them (unless it’s on purpose). One of his favorite small toys is a small handled trinket that holds 3 small bells. He loves to bang it down hard on his bumbo desk. He also enjoys having his drum on his right side and uses it as a comparison/safety zone to other sounds he makes and textures. He scratches his fingers on it and bangs on it very loudly.
And music. Joey loves music so much. Any toy that plays music is an instant hit. Once a song starts, he freezes and listens intently. Once the song ends, he immediately searches for the button to restart the music. His CD player will instantly relax and soothe him and he gets his most enjoyable moments cuddling while his favorite CD plays. He doesn’t get sleepy or bored…he simply listens with all of his heart. Afterwards, I will put him on his keyboard and he will bang and bang as he realizes that he is in charge of the sounds. I don’t know a lot of songs but he does enjoy when he play and sing “Do, a Deer.”
He also really enjoys Patty Cake and “Yayyyyy” while we clap our hands together. He is very motivated to lift his head when he knows he will get a “Yayyyy”.
We recently saw an outside PT for an evaluation and it was horrific. She obviously had no experience with visually impaired babies plus her personal communication skills were atrocious. I personally didn’t even know her name until I saw her set her badge down to take Joey. Upon our first conversation, she came across very high on herself. She constantly put down the current OT we were seeing, not that she knew this person, just that what she was doing was all wrong. She was extremely condescending but I was calm and decided that I would be patient and see how things went with Joey.
She basically just grabbed him and threw him around. He was screaming and crying and she was overall…an idiot. She obviously has no business with babies or the blind and when I finally began crying out of anger, she assumed it was because I was upset over Joey’s assessment and said that I probably shouldn’t have been there, that most parents wait in the waiting room. Excuse me?!?! He’s a baby..not happening! Thank goodness I was there because at one point, she simply laid him on his side and walked away with no explanation while he screamed. I jumped down and scooped him up and decided she would never touch him again as all she basically did was terrify my sweet angel. Just to give you an inkling of her ignorance, she shook a toy in front of his face…he’s blind. Good grief. I put a call in to the manager of the clinic Friday but haven’t heard back yet. I’m sure they are getting her side of the story first, as expected. From my experience, I’m sure nothing will happen but I will not rest until I say my peace.
His orthopaedic doctor found a vertebrae in his L2 lumbar that was a slightly misshapen, called kyphosis. It can cause problem with the shape of his spine and push into his spinal cord as well as create problems for Joey trying to sit up tall. He ordered an MRI and a follow-up X-ray and as it turns out, his vertebrae are calcifying in just the right place. His misshapen vertebrae is not pushing into his spine at all. What he did find was a little unnerving though and will have to be handled by a neurosurgeon. He discovered that Joey’s spine is actually too long. It’s called a tethered cord and the neurosurgeon will have to evaluate it and decide if he needs an operation. It’s scary because upon researching the issue, we discovered that not operating on it could cause paralysis or extreme developmental problems and operating on it puts a risk to his spine that could also cause paralysis. He has an appointment in April with the neurosurgeon so we will have to trust what the doctor says and go from there.
So as mentioned above, we will see the neurosurgeon for the spinal cord issue. We are hoping that his shunt is still doing its job. At our last appointment six months ago, it was already becoming clogged with brain matter but it wasn’t too bad. Most shunts, if they are working well have to be replaced within the first two years of life so we are expecting this at some point. We wait and watch for symptoms of clogging which include lethargic behavior, vomiting, fever, reddening and swelling of the shunt area. Once this occurs, we were instructed to drive straight to TCH emergency and request neurosurgery. Joey had extreme hydrocephalus , most likely caused by his bilateral grade IV IVH (brain bleed) and the shunt really did its job allowing the brain to grow and expand. The parts of the brain that were damaged can never be repaired but other parts of his brain could take over and learn how to work for the damaged sections.
We met with a neurodevelopmental doctor (through the Meyer Center) who was actually the first doctor to say that he thinks there may not be as much brain damage as originally thought and the issue may be the “white matter”. He described it like a computer. The brain is the computer and your actions are the monitor. The white matter are the cords. This is where Joey’s problem may lie. So we are waiting for this doctor to evaluate his MRI and get back to us. He is a very nice man and I like him very much. He kisses Joey’s hand a lot during his exams and tells him “we love you” over and over.
His helmet is working to repair the flat part of his head. Joey is supposed to wear it 23 hours a day. I only make him wear it at night. He hates it so much and becomes so lethargic that he can barely function and I just couldn’t stand to see my little boy that miserable. Is he manipulating me? Probably. And he wins. The doctor told us that he didn’t really think it would work on Joey but it is! It’s going very slowly but there is improvement so we are looking at about six more months of helmet time.
We thought that Joey was about to be taken off his monitor. This monitor looks for apnea episodes and also records his heart rate. If his heart rate goes below 60 beats per minute for more that 15 seconds, it alerts us. Lately, it has only been going off when the cords get loose, which is quite startling at night and annoying. Joey only wears it at night. For some strange reason though, the memory light had been coming on saying that he was having a lot of episodes. After reviewing his monitor downloads, his doctor saw some Bradycardias which are due to low heart rate. This is something most preemies deal with and outgrow and we thought Joey had overcome this problem. The monitor hadn’t been going off because his heart rate was only dipping down for a few seconds. So, it has been decided that he will stay on the monitor and do a sleep study. We aren’t sure when the sleep study will be but I was told in the next 2-5 months. Geez…
As it turns out, Joey has a paralyzed vocal cord that may not ever repair itself. His voice will always be soft and quiet. The exam to find this out was awful for him but the doctor was the sweetest. I almost asked her if she had a paralyzed vocal cord because she spoke so quietly and soothingly. I really liked how she explained how things would happen instead of just “attacking” Joey (as I like to call it). She put a syringe full of “goo” into each nostril and that had a numbing agent as well as a decongestant. Then we had to wait 10 minutes. Joey was of course very upset so we worked on soothing him during that time. Then she came back in and I held his body while a nurse held his head and she inserted a thin camera tube in through his nostril to watch his vocal cord. He needed to be awake and crying (which I understood) so she could see the movement. The doctor said it would be the longest three minutes of my life but it only ended up taking about 30 seconds, thankfully. Joey was a trooper. She asked if Joey had a PDA ligation at birth (a clip on his heart) and I told her he had. She said that many times this causes the left vocal cord to become paralyzed as they share the same nerve. The good news is that the vocal cord is paralyzed close to midline so surgery may not be necessary but even if we do decide to try surgery, it won’t happen until he is five, maybe ten years old. We see her once a year.
Joey had a horrific eye exam in February. His ophthalmologist is wonderful and has been with Joey from the beginning but these exams are never easy. It started with a ridiculous wait of an hour and a half. Then his eyes were dilated and they said we would have another 30 minute wait. After another hour, I decided we were done. Joey had therapy scheduled that afternoon and sometimes I don’t know who these people are thinking that it’s just ok to make patients (children) wait indefinitely. I was polite and asked the receptionist how much longer it would be as we had a therapy appointment and she began lecturing me, stating that I should have told someone I had another appointment. I stood there for a second, then decided that she was ridiculous. Why would I think that I needed to tell them at check-in that I have another appointment in FIVE hours?!?! So I said that to her and when her response was not favorable, I took a deep breath and just as I was about to unleash my unlovable side, we were called in. All I can say is that she was saved.
The first doctor we saw was a fellow (and this happens a lot at TCH). She began examining his eyes from a distance and then told me that he was near-sighted in his right eye. I looked at her and almost burst out laughing. “Does he need glasses?” I asked. “Oh,” she stuttered, “I mean if he could see, he would be near-sighted”. Good grief. Where do they get these people? She went on to say his left eye was black, there was nothing there. I just wonder if she could have been a little more direct (sarcasm). Of course it is, it’s detached. I then asked what are some possible upcoming procedures for Joey since his right eye muscle will obviously deteriorate? This woman turned around and literally sighed as if I was completely interrupting her and had no right to ask question and then gave me some ridiculous short answer. I was about to lay into her but I knew we only had 30 minutes before we had to leave so I held my tongue. I was feeling very impatient by now.
The doctor came in and was pleasantly surprised to find that we were expecting a baby sister. He’s known Joey (and Eli) for almost a year, since he was hospitalized. He had me hold Joey while he examined his eyes and this went on forever, mostly because he was looking for something specific. Joey was crying and crying and after a while, I began to cry as well. Afterwards, he told me that he thinks Joey may have something going on in his right eye, maybe he can see shadows or some light on the far right side. But we won’t know anything until Joey can tell us. It won’t be vision but if it’s light or shadows, this will help him with traveling. He will be able to tell when he goes outside or a light is turned on. But we have to wait and see.
It’s almost over! Joey has one more shot this month (he gets one every month) and hopefully it will be his last one. We have been homebound since last September and it’s very lonely. Joey likes to be home more than the doctor and to be honest, it’s probably for the best for me too, being pregnant. I still look forward to play dates and get-togethers with friends as I think the socializing will be good for Joey. And I desperately need some friendship.
Even though I believe Joey can hear just fine, it has been suggested by a few doctors to get his hearing tested so we just completed that task. The doctor was wonderful and asked why I thought Joey could hear. So I told her that he wakes up when we make noise, that music calms him down, that he turns to listen when he hears me getting his toys out, things like that. She then looked at me and said, “well yes, those are all clear signs of hearing…so, why are you here?” I laughed and said that several doctors suggested and I was finally beat down. The test was simple and in the end, even though I thought he would fail it, she said he did fine for his age and thinks he can hear out of both ears well. So we will wait and see if his neuro-developmental doctor wants a more extensive sedated test but for now, we are good.
Physical Medicine& Rehab – this is a clinic at TCH that will really decide if Joey needs any sort of ankle supports, a wheelchair or special walker, and any special rehab. He had an appointment 6 months ago when he was about 7 months old and he was assessed to be at the 2-3 month old developmental age. I really hope he has shown some growth. Well, I know he has. It really just all depends on the person who tests him and how they treat him. He will perform if he feels safe and comfortable but in the past, he has gone through evaluations with some real characters. For some reason, people like to shake loud scary bells really hard in his ear and when he freezes from terror, they say that he either can’t hear or there is something wrong developmentally with him. He usually bursts into tears shortly after. I wonder if they would like to have someone do that to them when their eyes were closed and they weren’t expecting it. Anyway, I guess we will see how it all goes.
This past year has been a difficult one and will continue to be a struggle as there have been many days when I still feel so angry at the loss of my child. It’s been an extremely lonely year as we have been homebound and few people have visited. Some promised and never made it, others had children and didn’t want to risk getting Joey sick, and for most people I understand. They still don’t know what to say or do. And so it has been me and Joey. Although my husband tries, he is consumed with law school and will sometimes go a week without seeing Joey awake due to his late hours and Joey’s bedtime. I miss having friends, going to lunch, going to work, but there is no other place I’d rather be that with my precious boy. It just gets very lonely.
I am terrified to have this baby girl, mostly because I don’t know how I am going to do it alone. Yes, my wonderful mother will be there to help in the beginning and other mothers have done it so I know I will survive. I want to make sure that all of Joey’s needs are met as he has a lot going on. Baby girl will have to go to his doctor’s appointments with us and one thing I hope for her to learn is compassion and loyalty, something l do see lacking in this world at times.
Sometimes I can feel myself becoming very cynical from the past year’s experiences and only God and I know the struggle and relationship we’ve had as I try to understand, to stay with Him. And the core of it will stay that way, between He and I. I will say this…I am grateful that He has stood by so patiently. I have plans and will carry them out. I know what God wants me to do with all of this and so now, it is a matter of waiting until the right time to follow through. But I will.
I still cry for my boys often. I will always be honest about that. This morning while I fed Joey his strawberry yogurt, he was deeply engrossed in the music playing in the background. I rubbed my hands on his little knees and went down his leg, “These are your knees,” I began, “these are your shins, these are your feet, these are your toes…you have 5 toes on each foot…1…2…3…4…5…”. Joey will never see these things for himself, he will only learn them from touch. I feel such guilt that he will miss out on these simple things. So I sobbed for his loss, apologizing over and over. It still breaks my heart when I see him reach out with fear in his eyes for the brief second he loses his bearings. I immediately grab his hands and bring them center and get right next to his sweet face, “Mommy’s here,” I say, “Mommy’s always here”.
So here I am…29 weeks along. I can only hope that I can handle this new adventure, that I have the strength. I hope I can.
Below are some cute pictures I took of Joey this past Fall, right before Christmas…hope you like them.
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