Fighting for Services

It's hard to explain the personal aingst that a parent goes through when fighting for their child. There are so many doctors that want to run unneccesary tests, other doctors who make a snap judgement based off of a 15 minute appointment, and yet other doctors who simply don't listen. And, apart from all of the medical logistics, the parent has to decide what they want to believe and accept.

Brandt had his Early Steps evaluation for continuation of speech and physical therapy services. I knew the direction this was headed long before the evaluation, I knew the speech therapist wanted to exit Brandt from services, so I did my homework. I went right on the government website, Easter Seals Florida, which funds Early Steps. I printed out and carefully completed their ages and stages questionnaire. Across the board, in every field, his scores were low.

So, the day came, and I was ready. Just as predicted, they wanted to cut speech therapy. I fought and fought, but there was no way they could dispute the facts. Brandt is just starting to do simple two-word sentences--and he only does that half the time. The milestone says that he should be making three and four-word sentences. Another milestone he falls short on is the use of pronouns "I, you, and me." He does, however, have a very firm understanding of "mine!" I continue to list off the milestones, and it became clear to the family service coordinator that there was no way they would be terminating services. Sorry Early Steps, you just met your match! Speech therapy will continue twice monthly as his secondary service.

As far as physical theray goes, that is never more than a two minute review of goals--this is his primary service due to the delays and safety concerns. There is no debating that Brandt has to continue physical therapy--he had a broken foot from tripping over a toy for Christ sake! There is still so much that he works on. His strength is growing, it is just at his own pace. He is working on walking on uneven surfaces (getting better), taking foot over foot steps(can do with assistance), jumping once (can't do at all), and kicking a ball (can't do at all). He will get there; it is just going to take lots of time and practice--and that is fine. Of course, he would benefit from therapy two days a week, but EarlySteps does not have funding for that. So, in the meantime, he gets weekly physical therapy as his primary service, and we reinforce the skills at home every opportunity that we get!

Of course, Brandt shows delays in his fine motor, but service providers are so limited. We have been on a wait list for a year for that, and I really am at a point where I just don't care. I have found plenty of reinforcers on pinterest that we work on. The biggest thing is getting Brandt to eat with a spoon and fork. He does ok with a spoon, but he spills more than half of his food on the journey from plate to mouth. Sometimes, by the time his spoon hit his mouth, he has nothing. All I can do is smile and laugh--gotta admire his will to keep trying! As far as the fork goes, that is quite a trick. Muscle tone in his wrists is weak, so stabbing the fork into anything harder than macaroni is a workout for him. The dexterity of the angle of wrist and fork is a whole other issue, much like with the spoon.

But, for now, we push forward with continued services. It is hard knowing when to push and when to just let go, when to trust the professionals and when to trust my heart. The one thing that always keeps me pushing is knowing that continuing services as a precautionary is easier than terminating and then fighting for them again when he enters school. So, for now, we will continue with services, as is.

We got the Boot

It is crazy how seemingly normal days so quickly change into a disaster--how something so small can create such a large disaster.

Sunday morning we all got up. I ran out to pick up a tasty treat for breakfast--a dozen donuts, a large sweet tea, and a mocha coolta--not all of me, of course! But Dunkin Donuts for breakfast--Can't get any better than that. Aw, life is so sweet!

I quickly returned home. But, as I walked in the door, I am greeted by "Peg-Leg Pete," otherwise known as Brandt. He limped toward me at a snail pace. Perpelexed by such unfamiliar behavior, I asked Darrin what on Earth had happened.

Well, as it turns out, Brandt was sitting in his Elmo chair--getting his cartoon on--when he decided to get up. As he was gettting up to walk off, he got a toy caught around his foot. Instantly he let out the most horrific wail and tears quickly flooded his face.

Now, Brandt falling is no phenomenon. It happens every day, usually twenty times a day. He falls. He runs into walls. He gets hurt. That's just how it goes. But, he almost never cries, and he has certainly never limped before. So, where this reaction was coming from was alaraming.

Brandt hobbled over. "u-mama.... hurt....u-doctor....."

I giggled, thinking it was cute. Now, I am not the parent that makes a federal production over every little boo-boo. Kids get hurt. They heal. Life goes on.

So, I figured we would distract him with a little TV. You know, get him off his feet, let it rest, and see how it was after an hour. So, "Thomas the Train" captivated his attention and took the tension off his foot.

An hour later, he was done with sitting--and done with TV. He hobbled his way to the kitchen for a drink. He didn't whimper or make any mention of his foot bothering him. And, yet, he hobbled and wobbled. Darrin and I looked at each other, and we knew this was not our usually bump on the leg, scraped knee,  or knot on the head.

We immediately took him to a walk-in clinic. The physican did a series of x-rays, reviewed them, and send us back for more x-rays. His findings were unclear. It did not appear to be a break, though he mentioned that breaks may take longer to appear in young children. The doctor went off into the usual medical jargon that no one really understands, except for the doctor himself. In the end he concluded that Brandt probably sustained a hairline fracture to his ankle. The nurses wrapped him in a knee-to-toe splint, and the attending physician told us to follow-up with our pediatrician in four days.

So, today Darrin took him to the pediatrician to follow-up. After a quick physical exam and review of the previous X-rays, Brandt was referred to an Orthopedist.

Luckily, the Orthopedist was able to squeeze him in today. The orthopedist was very thorough and knowledgable. She also reviewed the X-rays, but found them to be of low-grade quality. She did a physical exam of the foot and immediately found the problem. She felt the top of Brandt's foot and noted an abnormality. She then followed up her hypothesis with her own series of X-rays. These X-rays affirmed her findings, and she concluded that Brandt has a fracture in his forefoot (not his ankle)--specifically a fracture of his most-outer tarsil. 

So now Brandt will be booted for at least the next two weeks. Then, he will return for more X-rays to see how or if the injury has healed and if there is any calcium build-up. From there, we will discuss if further treatment is needed. Still, I am so glad that the slippery, hard splint is gone; I was just waiting for him to fall and bust his head with that mess.

So, in the meantime, we are booted.

Drained by Doctors

Wow, once again I find myself behind on blogs, but I will do a quick catch-up.

Over the summer, Brandt finally had the chance to be a kid. I let appointments slip and afforded him more time to play. It was the first time in his life we weren't hustling from appointment to appointment--the first time we were able to enjoy a "normal" life.

But, by the end of the summer, it was back to reality. I crunched all doctor appointments into the last little glimmer of summer.

The ENT went ok. Brandt has one loose tube that the doctor will try to remove at the next visit--yay. Hopefully they will both be out soon. After all, what is summer without carefree swimming and splashing?!?! And, with tubes, the beach is a huge risk. Sand is the biggest danger with tubes. So hopefully we can put all the extra precautions behind us soon.

During the visit, the doctor did briefly scold me on canceling an appointment. But, of course, he is not the one taking off work to drive two and a half hours to Miami Children's Hospital. But, he only made a short remark about it, so I just left that alone.

Next, we followed up with the neuro-ophthalmologist. This appointment was far less productive and far more irritating. It seems at all the appointment, all he does is give Brandt a five minute look over, bill us, and send us on our way. 

Well, once again, I cancelled an appointment. Personally, I do not understand why he needs his eyes checked every 3 months. Nothing is going to change that drastically in such a short period of time--and if it did, THEN I would call and have him seen. But, every 3 months for nothingness just seems like a billing scheme to me.... I'm just saying. 

And, yes, this doctor really called me out for missing the appointment. And since he decided to make a  production of it, I asked him what he was looking for that Brandt needed to be seen every 3months. Of course, it offended him, but if he is going to jump in my business without knowing the circumstances, then he better be prepared for my to jump in his business. But, whatever....

So, Dr. Doofus gave us picture cards to practice with Brandt--much like black and white hieroglyphics. He has six pictures that he is supposed to be able to identify at various sizes... Basically like an adult's vision test--but with pictures.

The problem is--he may look at the picture and know in his head it is a duck, but that does not mean he is going to say duck. He might call it a snake or a train--with a straight face--just for the hell of it. The other day I was doing a puzzle with him, and he called the turtle a snake. I don't know why he call it a snake. He knows what a turtle is. He has identified them in person, on TV, in cartoons, and with the puzzle thousands of times. That is just his personality. --And there is not trying to correct him, he'll just scream, "no!"

And, then there is teaching him the cards. This kid has no attention span. He is little and curios--and he isn't about to sit and look at black and white hieroglyphics! So, we will see how I will find a way to teach him the pictures. 

Oh well. So, we will see how this vision test goes in three months. But, I am betting far less productive than anticipated.

Last year I missed 20 days of work (many unpaid), drove all over Florida, and spent thousands in health care. I don't need any lectures from doctors. After all the beatings I took for missing appointments, I am done for a while... Well, until October, that is.

Coming to an End

Hello again to all of my faithful followers! I know, it has been too long....

Our summer started out without a hitch. We spent our mornings--before the afternoon showers would come--playing in the pool, running through the fountains, and exploring the parks! It was such a blessing--this being the first summer where Brandt has been active and not shuffling from appointment to appointment. We even snuck in a trip to Tampa. We have truly loved every minute of it!

At the start of the summer, Brandt was going to the sitter two days a week, which allowed me to tend to doctor's appointments, grocery shopping, and household chores. That time was so nice. But, it came to a quick end when our sitter's pregnancy caught up to her, and her body was no longer able to meet the demands of a rambunctious two-year-old. We were very sad to lose her, but health and safety must come first.

I started Brandt at a new sitter part time so that he would have a chance to adjust before being thrown in. The first few days were hard--being thrown into an unfamiliar environment with a bunch of strangers is a lot to take in for a little guy. Thankfully, he has since adjusted--making it easier on me, too.

Over the summer, I have been able to attend to Brandt's therapy--both a blessing and a reality check. It is so easy to forget about Brandt's struggles when I don't have to be confronted with them. We have accepted his disposition as "his normal" and don't think about society's normal. I mo longer read milestones, accepting that he is learning and developing at his own pace. But, the therapists have put me back in check--something I know is important as Brandt's best advocate. We continue to work on his balance and coordination in regards to walking, especially on uneven surfaces (grass, sand, inclines, etc). Stairs are quite a challenge, but he thankfully enjoys practicing the stairs at the park! I've asked for direction, and the therapist tells me his problem is neuromuscular. Meaning a neurologist would be my best resource for guidance and diagnosis. I'm not sure that I am mentally ready to go back down that road again, but I also know that it is something that I will need to explore in the near future. As far as communication goes, we are working on using two-word statements. Currently, he only does this 20% of the time, and it is only with the same few phrases. A lot of his "two-word phrases" seem to be slurred together, as if it were only word. But, he keep probing and pushing, always moving forward.

As the summer is coming to an end, we are following up with some of Brandt's doctors. We did a trip the the pulmonologist--who added in a daily antihistamine. We did a day in Miami to visit the ENT--which also meant a fun visit to Miami Seaquarium. Brandt has one tube that is ready to come out (he's had them now for over a year), so the doctor will take it out at our next visit. Brandt has an appointment at his neuro-opthamologist today, a routine physical at the end of the month, and a six month evaluation with Early Steps in September. Then, it is back to Miami in October to pull that ear tube!

So, for now, we prepare to go back to the grind and routine. But, that routine will soon be changing because.... i'm pregnant!

Darrin and I are expecting a little girl, Brooklynn Marie, to be due at the beginning of January. She is due exactly a year after the passing of Darrin's mom. Being the only granddaughter, we know Brooklynn is a gift from above. Her name was a thoughtful decision. "Lynn" being my mother's middle name and Marie being a spin-off to Darrin's mom, Mary.

Of course, given our history, this pregnancy has been a stressful one. I have done lots of extra screenings and tests. Thus far, everything has came back normal. Still, we have a long way to go before I will bring our baby into this world. I pray nightly for her health and safety, and I do everything I can to stay healthy for her. In some ways, I wonder how my HELLP syndrome and emergency induction effected Brandt. I wonder if I should have noticed more fetal movement than I did, if all of my extra committees and after-school activities were too much. So many old emotions and feelings are coming back to me.

The baby's nursery is all set-up, as if I could bring her home today. I think seeing it all put together is a way of coping, of making it all seem real, of saying that eveything is going to be ok. Every little outfit I buy or decoration I add is just my way of coping and reassuring myself. So, I press forward in the only way I know how--retail therapy!