As I sit and enjoy a few minutes of peace and quiet before the Sirmon sisters start their day, I am also watching Benjamin’s O2 saturations on the monitor hang out a little lower than I would like. Lennon and I started with a cough this week and Isla has projectile snot every time she sneezes, so I figured it would be only a matter of time before Benjamin would also show some symptoms. I am praying that this is brief and easily managed.
On a positive note, Benjamin had a good week of appointments. Thursday, Benjamin had speech therapy. Benjamin has not been swallowing as well since his last hospital stay, and his therapist has had trouble facilitating a swallow with just water. (not very tasty) Wednesday, the therapist tried breast milk with Benjamin with some improvement, and Thursday, mixed a small amount of puréed pears with the breast milk. Previous studies on mice show that breast milk is safe for the lungs if aspirated, and we were ready with suction when trialing the pears. Once Benjamin tasted the pears, it was like we had starved him. He swallowed more than the last few sessions combined, and when he was finished, he continued to fish around his face with his tongue looking for one more taste. Success! We can’t work with the pears often in fear of aspiration, so next week we are trying frozen breast milk for its consistency. She is not working with the pears in hopes that Benjamin will eat soon, she is only using the taste to help facilitate a swallow. He must be able to handle his saliva before we can even consider eating. Benjamin’s speech therapist is on his team. She doesn’t give up, and continues to brain storm for new ideas.
Friday, Benjamin was scheduled for MDA neuromuscular clinic. Though we are very happy with Benjamin’s neurologist and pulmonologist, MDA clinic gives us access to additional brilliant minds, including an orthopedist. We received all good news. They all thought Benjamin looked great, and to continue whatever we are doing. Spine was straight, chest x-ray was clear, and he showed the neurologist all of his tricks.
I am sure the silence in this house will be breaking soon, so I will sit and enjoy watching Lennon snuggle up to Benjamin on a pallet on the floor. Lennon asked for a slumber party in the living room, so our floor is covered with blankets, and I am far from well rested from sleeping on the couch. I love watching how much they love Benjamin, as well as, wanting to include him in everything.
Last week, Benjamin was able to take his speaking valve home. He has tolerated it so well, and is able to wear it over an hour. I usually only remove the valve because he has fallen asleep. Benjamin has been gradually working on making the sounds louder. Over the weekend, I was able to hear him cooing while he watched football, and I was in the kitchen. Joyful noises! The valve not only helps Benjamin make sounds, but it also assists in bringing more awareness to his mouth and tongue. Benjamin’s new trick is that he makes kissing sounds. This is the cutest thing. We make him do this all day. The best part about this is knowing that if he can get his lips together to smack, then he should be able to get his lips together to say mama!
Wednesday, Benjamin saw an optometrist. She was wonderful. She assessed Benjamin’s eyes, noting, but not focusing on the ventilator. She gave us great therapeutic techniques to work on Benjamin’s strabismus. He will continue to see the optometrist every 6 months to update the treatment and assess for progress. She is on Benjamin’s team. 🙂
Overall, Everything has been great, but we did have to take Benjamin to the pediatrician. He was having some episodes where he would be really red, then completely white, as well as, increased fluid at his soft spot. So far, the thought is that he is on too much blood pressure medication, so we are giving half doses. Benjamin already looks much better.
As I sit outside on this beautiful Saturday morning, the silence (except for hearing the kids yelling down the street) gives me a chance to think about how blessed I am and to thank God for everything he has given us. (especially the breeze this morning) 🙂 Our busy and crazy life has slowly transitioned into our new normal and I am enjoying every minute of it. Sometimes it can be tough, but I am determined to always find the silver lining. Benjamin, Isla, and Lennon make that much easier. As time has gone on, I have been able to involve Benjamin a little more into our daily lives. What is my mommy milestone? It may not sound like much, but for someone who likes to go when she wants, this is huge. Sunday, after all our friends were heading back from the Saints game, (moment of silence) they decided to stop and eat. KC was going to come on home, but instead I said go and we will meet you there. I had never traveled alone with Benjamin. I had discussed this multiple times with the nurse, but just couldn’t brave it. Benjamin was by far the easiest to get ready as I gritted my teeth chasing Isla around with shoes, and listening to her contagious giggle. That girl is a mess. The ride was thankfully uneventful. By the time I made it to the restaurant, I felt fine; however, a friend pointed out my trembling hands. I guess I was a little more nervous than I thought. Not only did we make it without a problem, I have braved traveling short distances again with Benjamin. He has no idea what he is getting into and where we may go next! 🙂
This past week has been full of milestones. Where do we even begin…
Last Friday, Benjamin was measured for a wheelchair and bath chair. He is growing longer, much faster than wider, and will only be able to use his bouncer, bath tub, and car seat a few more months. The wheelchair is adorable, and will be able to hold all of Benjamin’s equipment. Once we have the van altered and Benjamin has his chair, the sky is the limit. Oh the places we will go!
Wednesday, Benjamin was able to start back with Speech therapy at Tulane. Almost a month has passed since his last visit when he was fit with the passy-muir valve. This valve keeps air from blowing out through the ventilator circuit, and forces it to pass through his mouth and nose. Once again, Benjamin amazes us and tolerates the valve for 30 minutes. He showed increased swallowing, mouth and tongue movement, and a slight increase in vocal sounds. Maybe because he is just amazing, or maybe because I don’t set ridiculous goals for Benjamin, but he continues to attack every task head on and never disappoints. 🙂 We returned today for speech and Benjamin amazed me once again with a significant increase in vocalizations. You can hear the sweetest and softest little sound between tiger growls.
All of Benjamin’s therapists continue to see progress every week. He is able to hold his arms over his chest and head longer when reclined back, and it even looks like he is waving.
I also tackled our issue with ophthalmology. Since I decided we only work with people that will fight along side Benjamin, we have another appointment this week with an optometrist for another opinion. This optometrist deals with visual issues emphasizing therapeutic techniques. Though this treatment is commonly not supported by physicians, we are going to give it a try. The eye is controlled by muscles, and as a therapist, it only makes sense to give it a try. I am anxious I hear her opinion.
Now, the entire family is loaded in the car and we are headed back to Mississippi. I have never been one to stay at home too long, so I have been looking forward to this trip, a relaxing weekend with family. Unfortunately, the relaxing part had been delayed a bit since I forgot two important cords to Benjamin’s equipment and detours had to be made. Never a dull moment.
Thanks to Hurricane Isaac, Benjamin missed his long awaited opthalmology appointment. Luckily, when I called on Tuesday, they had an opening in the afternoon, so we loaded Benjamin in the car and headed to Ochsner. I am not sure what I was expecting from this appointment, but I do know I wasn’t expecting the recommendations we received. We are completely aware of Benjamin’s eye problems. The problems are from weakened muscles that open his eyelids (ptosis) and control his eye movements (strabismus). I wasn’t going in expecting or wanting surgery for Benjamin, but instead was looking for a non-invasive treatment.
The doctor came in and immediately starting talking about Benjamin’s lengthy medical history. (yes, I am aware…) He then proceeded to evaluate Benjamin noting everything we already knew. At that time, he once again, noted Benjamin’s medical history and the ventilator, (thanks for reminding me…) and said he wouldn’t recommend any surgery at this time. He continued with talking about how in most cases this needs to be taken care as soon as possible, but looking a the whole picture, (once again noting his lengthy history and ventilator) surgery is not necessary at this time. I then asked about other treatments, glasses, eye patching, drops, and he stated, “they never work” and “it would be too much trouble.” DID HE JUST SAY THAT? These treatments would be the easiest part of our day. He concluded saying that he wants to see him back in a year to evaluate him again… I know he was thinking “if he makes it that long.” Maybe I am reading too much into this, but I am usually very optimistic when it comes to Benjamin’s doctors and appointments. This one just has not been sitting right with me.
Tomorrow, I start researching other ophthalmologists and optometrists. I only want Benjamin surrounded by people who believe he can beat the odds. We are not at the “make him comfortable” stage, we are at the “help him be whatever he wants to be” stage. Thanks for the evaluation, but we move on. 🙂
Thanks to our wonderful
accommodations, our evacuation seemed more like a vacation. Benjamin and the girls enjoyed every minute with their cousins, and I enjoyed time with my wonderful hosts as well. 🙂
On our way to Hattiesburg, we received many calls from family worried that we were headed right into the hurricane’s path. Not once was I concerned. The decision to head to Mississippi was made after serious thought and prayer. As we sat inside watching the light wind blow and rain fall, we all felt very blessed to have dodged the storm and power outages. I thought the Hattiesburg area had completely missed the hurricane; however, after watching the news, it seemed like we were in the only area that truly missed the storm. Surrounding areas had trees down, power outages, and flooding. It was almost as though an umbrella had been held over our home for protection from the storm. A power outage would have raised everyone’s stress level a bit with Benjamin in the house. I am sure there is a little pressure when you take in our family. 🙂
On our way home, we made a stop to see Benjamin’s pulmonologist for a follow-up appointment after the hospital admit. He was pleasantly surprised by how wonderful Benjamin’s lungs sounded, and he felt there was no need for another x-ray. Thank goodness, because I am waiting for Benjamin to start glowing from all the radiation. Lennon and Dr. Urrego did have some interesting talks about Justin Beiber.
We have all settled in and Benjamin looks great. He has been off supplemental oxygen since we arrived back into Louisiana, and he continues to show progress. Last night, after I suctioned Benjamin’s nose, he started to tear up a little. (He hates nasal suctioning.) I started to walk out to get his food, and I stopped when I heard Benjamin crying quietly. Now this is not a normal baby cry, but it was some sort of vocal sound. Most mothers would be upset, but I was thrilled. I listened to such a wonderful sound for just a minute before I picked him up to calm him. To be able to know when he is upset, other than when I am staring right at him, would be wonderful. I eagerly look forward to the day I can rely on Benjamin to let me know when he needs me, and not just have to rely on a monitor.
Though we were able to miss damage from the hurricane, I have friends who did not. Please keep them in your prayers as they begin the recovery process.