When Mayla was born we joked that we needed to rewrite a NEW baby book, as anything and most everything we were reading in the 'traditional' baby books, was not our little Mayla, she is now a toddler and I'm saying the same thing:)
Over 9 weeks ago Mayla decided I had plenty of restful nights, since she was such a good sleeper, and thought it would be 'good' to change things up a bit with a persistent night time cough that woke me, startled me, and sent me sprinting into her room to see if she was ok. I blew it off for weeks though, thinking it was the same bug that every other child had....there were random fevers in there as well which really threw us for a loop, so after about the 4th call and visit to the doctor we decided to try a couple medications. When we found out she was aspirating they decided to do a chest x-ray on her, thinking she most likely had pneumonia, the doctor was actually certain. So off to the children's hospital we went with a prescription in hand for pneumonia...an hour later we found out we didn't have to fill the prescription as her lungs were clear, we were shocked! Some nights the cough led to throwing up in bed, full baths and new sheets, which I always blew off as 'must be the flu....again'.
We started the ball rolling for the ENT, a process that took longer than it should have due to some miscommunications within the doctors office. All I knew was she was all over the board and nothing seemed to be helping. My heart broke for her. After a week straight of medicating her, trying to bring relief, she started throwing up. She would throw up during the day now though, 1-3 times, and it had no pattern to it besides normally associated with coughing; some times it came during meals, after meals or probably while thinking about meals. She always wanted to eat though and acted fine. We were worn out and perplexed. I was on the phone every other day it felt like with the doctor's office, trying to get some answers. We switched up her thickened drinks, thinking it was what I was giving her, which heightened my stress to the moon as we had a system that was working. The change left her not wanting ANYTHING of hers to drink, on top of throwing up and a lack of wet diapers; bad combination for any parent to see. I was drinking my Zija with her one morning and she wanted it, normally I would fight that battle and tell her she couldn't have it becuase she needed thicker Zija, but I was desperate, I was fighting a battle and was weak, and gave her some, I then had to fight the guilt battle, and it was draining. The liquid was good for her fight against dehydration, but bad for her lungs if she aspirated it!
Mayla had gone one full day without her normal 'goop', and had not thrown up all day, we thought we finally had an answer and were pumped, until 10pm that night when she threw up in bed, all the questions plus more came flooding back. I was annoyed, worn out and sick of bringing a bucket and towel with me whereever we went, and heart broken. I knew that the second the doctors office opened I WOULD be calling.
During this time, in between all the crazy ailments, speech therapy continued, and talking to a few other therapists, they recommended we see a food therapist, between the food struggles we were still having and the new life of having to thicken liquids; that was still hit or miss most days! So after more phone calls, more paper work and more scheduling we were walking into Mary Free Bed Rehabilitation Hospital, this just so happened to be the day after she had thrown up, and yes i DID call the doctor and after food therapy we were heading to the pediatrics office. It was a crazy day, but timed perfectly. The first day of food therapy they also have a nurse talking with you, she was just as confused as I was about Mayla's recent history. However I had been doing LOTS of internet research and came to the conclusion that Mayla could have GERD, a reflux problem, which the nurse also confirmed could very well be. It was perfect timing that I would be heading to the doctor right from that appointment and be able to talk to the doctor about this idea. Food therapy was an hour long and very informative and helpful, I was excited for the journey, however nervous and overwhelmed as to what this 12 week, two time a week program would look like in our life.
On to the doctor and he confirmed that Mayla could have GERD and suggested a possible sinus infection. We walked out with a medication to 'treat the GERD acid symptoms' but not help it go away and an antibiotic. It was 'pure joy' to find out that Mayla didn't like either medicine and for her to show me by way of throwing it right back up, as if I hadn't seen enough of it lately we now had a medication that induced it. So we mixed it with applesauce, she caught on, we mixed it with pudding, she caught on, so we gave it to her plain again, she puked, so we mixed it with a strong syrup and she only made puking motions, we then mixed with pudding again and it worked...I now rate how good my day was based on if Mayla made it through the day without throwing up, I long for more than 3 in a row!
We went to our 2nd food therapy session on Monday, and to our pure excitement, SHE GRADUATED:) The lady was very impressed with how Mayla was using her mouth, moving food around, and the fact that she was drinking some thickened liquids! I did not object to her early dismissal of us and celebrated when I was able to delete 11 weeks of appointments from my calendar, based on certain other family events that have turned up, this was as MASSIVE blessing to make some room in my calendar!
The following day we were headed to the Ear Nose and throat Specialist. He thought Mayla sounded good, looked good and she was so cooperative in her extremely loud screaming that he was able to get a good look straight down her throat. I was hoping to walk out of there with a scope appointment set up, but he said based on how things were going now, he wanted to wait, which I understood and was in support of as I did not like the thought of putting Mayla under so we could have a good look down inside, okay well I was a LITTLE ok with it as I was desperate to have 'answers', but the thought of us avoiding the appointment was wonderful.
And she had been doing better (until last night when the coughing started again). She still has some interesting things going on, and we are not sure where to turn to next. We are still curious if she is aspirating when drinking, why she sounds congested after every meal or every drink, or why she coughs so much. I want to take her place, he little 19 month body has been through TOO much, the only great thing out of all this is all the cool office toys she has been able to play with lately, but that's it! At the hospital when a nurse was coming to check my dad, Mayla lost it....she thinks anyone in scrubs is coming for her, poor thing!
Mayla is getting some where with her speech, but it's slow. Next week we start a two day a week speech therapy group, that will last for 5 weeks and i'm interested to see how it will go. She can now say 4 words, Eat and No of course being her favorite. But as she gets smarter and smarter each day it seems she also gets more and more frustrated that she can't communicate what she wants, so i've also been trying to work on the sign language more too and she has added a few more to her list of those as well.
At one point in time during this long journey I was reading Jesus Calling and it said, "The best way to handle unwanted situations is to thank Me for them. This act of faith frees you from resentment and frees me to work my ways into the situation so that good emerges from it." Most every day lately has involved an 'unwanted' situation and it's been a real challenge, but I have been thankful. Thankful i'm Maya's mommy and can walk this road with her and am fortunate enough to work from home, thankful for the random snuggles that come when she's just screamed her face off for a doctor and finds comfort in my arms, i'm thankful for little things, like speaking English and being able to communicate with doctors and nurses, and a doctor available 24-7 via the phone. We have a hard situation right now, but it's also one that allows us to function from day to day. I keep thinking about the two words, inconvenient and uncomfortable, and this is, but it's at those times God can use you the most if you are willing. Our word since Mayla was born.....TRUST, and it stands out more and more every day, it's not about trusting in what I can do for Mayla or what Will can do or even the doctors, but what God can do for her. He created her, he loves her and he is her loving father who will not abandon her nor us!
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| Waiting room fun, climbing on chairs |
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| Watch out for Mayla the school bus driver at speech therapy play group |
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| one big waiting room all to ourselves |
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| entertainment while Mayla waits for her food at food therapy. |
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| loving life with the 'cool cup' and a WHOLE cracker, this is a huge step for Mayla being trusted with this |
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| such cool toys |
