The endeavor continues and ends with celebration

I have neglected my writing since my last post because I have been simultaneously drained and in chaos with the latest endeavors.

I am convinced that I have a destructive addiction to social media and should probably remove Facebook from my phone. Lately a lot of posts from other special needs mom really trigger me. They cause a surge of emotions that I’m not used to. Being bipolar I can’t always filter them out. I have to scroll past a lot of posts. I don’t know if I’m starting to exhibit that special needs Mom PTSD, but I’d really like to stop being stressed out over other people. Wouldn’t it be lovely to be a carefree, arrogant, douche like my husband? I say that with love, I promise.


Today I am absolutely fried. We started off the day trying to get up early to take Joshua 2 to a genetics appointment that we have waited a year for. On the way to dropping off the husband at work we stopped at McDonalds for a quick grab and go breakfast. I dropped my debit card in between the parking break compartment, which can’t be removed. That’s when I knew the day was going to go to hell.
Then we arrived at the genetics appointment to find out that no one had checked on Joshua’s referral before the appointment, or at least reminded me to call and check on it. I figured that since someone from genetics was calling me days before the appointment to let me know that they did not have his microarray report, which I gave to them last year, that they would have clicked a button and checked on his referral. Well they didn’t. I called Tricare and it was so expired that they couldn’t do anything. The kids doctor’s office doesn’t open until 8:30 so I couldn’t call and have a STAT referral phoned in. I refuse to sign waivers because I know Tricare can be so finicky. After that little mix up, I decided I was done with Duke. I’ve had nothing but issues with their billing and the majority of the doctors are rude. I, very angrily, told the receptionist that I was done and I would have a genetics referral put into UNC. I called UNC to confirm availability of appointments. They are booking into August and September. More than likely it will be September. I was so frustrated that I wanted to cry, but instead started lashing out at little Joshua to hurry up and get in the car. We waited a year for that appointment to find out if his chromosome duplication affected him.  We wanted to see if his duplication explained his delays, ADHD, SPD, etc since they don’t consider his prematurity to affect him anymore.

So we drove home and I gave Joshua the option of staying home to play and maybe work on writing sight words until his therapy later that day, or going to school. He chose to go to school. On the way I called about my debit card and had to pay $12 to have another one overnighted. So I drove him to school, came back home, got Clark situated with his tube feed and lost all willpower to clean my kitchen. Once Clark took a nap I started on crunching numbers for the budget, reviewing my calendar for upcoming appointments, estimating parking fees for the hospital trips, and meal planning. I still despise meal planning. I decided to sign up for the free trial of E-meals.  I printed off 2 weeks of meals, looked them over, and immediately knew this wouldn’t work. They don’t have a dairy free option, some of the meals I knew instantly that no one was going to eat and some had ingredients that I just don’t buy. I was bummed, but there is no point in paying $10 a month for planned meals that I have to modify. I can suck up meal planning and save my money.

Clark did not sleep long. He woke up very grumpy and exhibited a lot of toddler head-banging tantrums. He mostly got into things and played with his brother’s sunglasses while I put some minestrone soup in the crockpot.  He helped spill tea all over the table about 15 minutes before therapy showed up. He did speech therapy, we ate some lunch, hurriedly packed our bag and picked up Joshua from school for OT.  Thankfully this time they had his Tricare referral in their system and didn’t need to scan my copy. I’ve had many issues with Duke, like I said, but his OT has been amazing. Today she said we will start working on more of the behavioral, sensory, and feeding therapy as opposed to more of the fine motor because school pretty much has that covered. I like that plan. Joshua did very well in therapy for being gone for almost 3 months due to billing errors. We are going to chart food that he is offered and see if he can at least get to the licking part of the sensory steps to eating, which is sequential oral therapy. Next week in feeding therapy he will be working with macaroni and cheese!
(I’ve had a lot of people ask if Joshua is actually Autistic. He is not. He has Sensory Processing Disorder along with ADHD.)

For dinner he ate his cantaloupe and biscuits first then we did the SOS approach to the soup. He smelled it, stirred it around, looked at everything in it and then licked it a tiny bit. That was it. That was all he was required to do today. Soups are really hard when there are feeding challenges because there are a lot of different textures, flavors and all the food is mixed together.  Clark ate all of his soup, some bites of biscuit and did not want the cantaloupe which was different.


Earlier in the week, Clark went to physical medicine who was very impressed with his skills. The doctor estimated that once he got his AFO’s and was comfortable with them that it should take 3-4 months for him to start walking. He won’t start off walking normally like we do. He will more than likely exhibit a large awkward gait with long strides and arms more outward for stability. But hey, walking is walking in my book and with time he will get stronger with the AFO’s. He gets those in about 2 weeks! He also goes back to the feeding team on Monday and we are happy to report that while he is still refluxing quite a bit, he is 23 pounds and taking 170 mls 2x a day and 410 mls overnight. I adjusted his volume so that he has more during the day and a little less at night.  Yesterday he had to go to his doctor for a nurse to help with a tube change. It would not come out. I tried twice that morning. He had to be relaxed and lubed up for it to come out. Man did he scream for his night-night. I felt so bad for having to take him in for a change because later that day he tried to tell me that his tube hurt by pointing and pulling on it. He was making a “ur” sound like he was trying to say “hurt.”   Of course, everything is better when daddy walks through the door and Clark forgets that he was playing with “dada’s hat” or that his tube hurts when he gets picked up and snuggled.

All week I have wanted to do nothing more than snuggle with my husband and fall asleep. I feel more clingy to him when he comes home after a long emotional day. My birthday was the 24th. I turned 27 and we celebrated 11 years together. We will be 10 years married in October. After a long week, I want to celebrate things instead of being sore and stressed out. Saturday we will celebrate Clark’s 2nd  tube-versary with a trip to the strawberry patch, pending it doesn’t rain.  I want to be proud of his accomplishments thanks to the vitality of the feeding tube, instead of being frustrated and irritated with it. My daily battles and endeavors will continue on. I just have to choose which ones to fight, which ones to let go, and which ones to celebrate.




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