Small Victories

Sometimes in life, you have to learn to celebrate the small victories, for the small victories is what gets up through the bigger battles.

That being said--yay! Brandt passed both parts of his vision test. He did the 3D depth perception with flying colors. The reading test was a little more frustrating for him because he had to have one eye covered, but he fought through it and passed!

Yay for life's little victories!

No Rest for the Weary

As next week approaches, my anxiety begins to mount. Every day next week is marked with an important appointment for my lil Brandt Bear.

Monday, we will travel down to Miami Children's to Brandt's ENT. This week, we have been preparing for the appointment by putting prescription drops in Brandt's left ear three times daily. The doctor is going to attempt tp remove that ear tube, as it was loose at the last appointment three months ago. I will be glad to see them go becauseI hate   avoiding sand and water, but I hope this does not mark the beginning of infections again.

Onward to Tuesday. Tuesday, Brandt eill go to see his pediatric neuro-opthamologist in Jupiter. He will be given his first official eye exam. Though he knows all the hieroglyphic pictures now, I am just praying he will cooperate. In practicing, he quickly becomes fatigued and bored. Unfortunately, I won't be at that appointment so hopefully daddy can coax him into cooperating.

Wednesday, I will meet with EarlySteps once more to go over Brandt's Family Service  Plan, particularly speech. At this point, we will be terminating speech services. I have fought the battle for a while, but I think I am fighting a battle that does bot beed to be fought. Brandt's language is emerging quickly. He now uses 3-4 word sentences. His vocabulary is strong, and he will imitate just about everything he hears--watch your mouth around this kid! So, I think now is the time to let go. Hopefully they do not try to spring on any changes to physical therapy.

Friday, Brandt has his well-visit with the pediatrician. That will be the time when we will once again have to address Brandt's heart murmur and possible return on anemia. I am no doctor, but the  fact that he has a heart murmur again is probably a good indication that his iron is low again. But, he is also exhibiting yellowing skin tone and dark circles around his eyes. So, yeah, probably need to do another complete blood count and get him on iron again--but that is a pretty simple solution!

Oh, and if you think I get a break from appointments on Thursday--guess again. Thursday I have my 32week OB checkup. For most, these are a quick measurement and heart-rate check, and out the door. Oh, no, not me. Nearly every appointment, they are running extra tests on my thyroid, urine, or platelets. It is always a pleasure--not! At the last appointment, my blood pressure was "pre-hypertensive" so they are monitoring me closely for preeclampsia--which caused me to be induced early with Brandt. My platelets are low, so they are making sure that those don't continue to drop, and the baby is suddenly measuring a little small. No word on what is causing her to be small yet--still waiting to hear back from the doctor with my ultrasound results--probably just takes after Darrin's mom. But, in the meantime, I wish people would quit pointing out how small I am, knowing that it also means the baby is small.

So, yeah, no rest for the weary. I just keep pushing onward for answers.

Me, Against the World

Have you ever had one of those days where you really just feel like it is you fighting against the world, where all hope lies in your hands, where you are fighting so hard you are ready to just let go and drop the load? It's been one of those days where I just feel like that last glimmer of hope is lost, that last spark of fight is gone. I am left emotionally drained.

When I got the text that started it all, my heart immediately sank. For a few moments, I was breathless, speechless--but so overcome with emotion. It took everything in me to fight back the emotions that had overcome my heart. I bit my lip so hard as to hold back what was inevitably coming. In my head, I kept repeating, "breathe, breathe, breathe--it is all going to be ok." And, yet, at this stage, I just don't know that it will be, or maybe I don't know that I have what it takes to make it okay anymore. It is me against the world.

The text message came through--one I had not anticipated or appreciated. The physical therapist texted me to get my opinion on reducing Brandt's services down to twice a month--this after having recieved a similar text from the speech therapist a week prior. It is all too much, and I have yet to reply to either.

How can I reply? What should I say? How should I feel? It is a roller coaster of emotions, but you have to understand the background to understand the circumstances.

First, speech. Brandt used to do speech weekly, After six months, we reduced services down to twice a month, and we have been doing that for the past nine months. It was a battle to keep those services, and now they are talking about dropping it all together. In theory, this should be a good sign--but it's not. They aren't cutting services because he is equal with his peers, because he is reaching the milesstones. They are cutting because he is showing "some" progress. Yet, he is still not where he should be.

But what do I do? Do I let it go because he is starting to aquire language, because he is catching up, because he is learning. Or, do I continue to fight because he is not reaching the markers when he should, because I do not want to lose the rate of progression we are making.

And, so, I say nothing. I ignore the text messages. Does this make me wrong? Does it make me a bad mother.

And, then the physical therapist chimes in with hers.

Brandt has been doing physical therapy once a week for almost two years. Yes, he is walking--but he doesn't walk like other toddlers his age. Yes, he makes slow progress, but on paper he has not mastered any of the goals or outcomes that were devised OVER a year ago. We are STILL working on balance, foot over foot steps, and walking with correct posture and position. He just, last week, kicked a ball for the first time, and he still cannot jump.

Two weeks ago, we were at the mall play area, and Darrin saw it. He saw all of the kids (many Brandt's age) walking, running, climbing, and maneuvering around the obsticles. It was the first time that I had ever heard Darrin mention that he noticed the delays. And, him finally saying this, further made me come to terms with all that is. After two years of fighting the battle alone, he finally saw a piece of what I see.

So, what is being proposed just sounds ridiculous. But, even more ridiculous is the reason behind the therapist's request. The physical therapist is not proposing to cut therapy from weekly to twice monthly because of progress--oh, no, She is proposing because of scheduling conflicts, and she doesn't feel that there is much more that she can do for him. I am sorry, but isn't that her specialty--her job--her forte?

And, so, another text message goes without a reply.

Every day my heart sinks and my spirit weakens a little more.I am defeated. I don't have answers. I don't know what to say or what to do. I am defeated. I have been fighting this battle for so long, and so often I feel like it truly is me against the world. So, I ignore. I know that is not a permenent resolution, but for now that is all that I have in me.

Never a Dull Moment

Well, just as we moved past the boot and get settled back with our old sitter, we find ourselves face to face with life's next little hurdle

Friday night, Brandt came to me, saying "ear hurt." Upon examining his ear, I saw it was filled with blood. I checked his hands, and noticed his pointer finger was covered in blood. Seeing his nails were long, I assumed that he'd cut his ear with his sharp nails. Immediately, I wiped away the surface blood with an alcohol wipe and cut his nails. As far as the inside of his ears, there was not much I could do; with tubes, he cannot have q-tips or fluids in his ears. I figured the rest would drain over time, so I continued with our nighttime routines and put him to bed.

The next morning, I laid Brandt on the changing station so that I could carefully examine his ear. Instantly, I knew we had a problem. Brandt's whole outer ear was covered in dark-red, dried blood. Again, I wiped away what I could, but I knew he was going to need more than just a wipe-down.

I contacted a friend, whose mother works at a local ENT, to see what she thought. I wasn't sure if he needed to go to the ER, or if a walk-in clinic could treat him, or if I was better off waiting until the next day to get him in with the ENT. Of course, Brandt's ENT is at Miami Children's Hospital so that was a dreaded response.

After getting a response from my friend's mother and talking it over with Darrin, we decided it was best if we went to Miami Children's Nicholas Outpatient Center. This satellite office is only two counties away, and it offers weekend hours. It also has his complete medical/ surgical history from the Main Hospital in Miami.

It was difficult for the doctor to see much in Brandt's ear. It was fluid-filled with wax and blood.  The doctor could not see Brandt's tube in the affected ear, but he indicated that it could have been covered with wax/blood build-up, or it could have become dislodged. The source of the bleeding could not easily be identified, either, because of all of the drainage. It could have been a side-effect for a severe ear infection, or it could have been caused from trauma to the ear (such as a scratch or from a fall). Either way, the doctor prescribed antibiotic drops. This would kill away any infection and help to drain any excess fluid out of the ear.

Oh, and upon the doctor's initial exam, he asked if I knew Brandt had a heart-murmur. In my head, I said "ah f*** yes," but I gave a polite reply with his history of the heart murmur. I told him we had a cardiologist clear him with an echocardiogram and an EKG. The cardiologist had indicated that his heart murmur was likely a side-effect of his iron-deficiency anemia. The only thing is, last time his iron-levels and heart were checked, his levels were gone and the murmur was not present. So, I am assuming the doctor's notation of a heart murmur is probably a good indication of his anemia being a problem again.

Crazy thing is, I was just telling Darrin a few days before that Brandt probably needed to have another complete blood count done. While out on a morning stroll, I thought his skin had a yellow-green tint to it--a common symptom of anemia.

So, put two and two together and make your own inferences... Think it is time to refill the ferrous sulfate and start treating the anemia again....swear, there is never a dull moment in the life of Brandt!

The Sitter from Hell

Well, we have finally been boot-free for two weeks. Everything seems healed, and he is all over the place again! 

But, life is never simple or dull for us--oh, no! A few days after the boot was removed, I received a very disturbing call from Brandt's speech and language therapist. She wanted to talk to me about Brandt's new sitter. She prefaced that Brandt was in no danger, but that he was not in a good environment. She sighted several reoccurring situations that she had noticed during her sessions there.

Apparently, she said that, after the parents drop-off the kids, the sitter pulls out a small tv and turns it on for the kids while she sits down and has quiet time for herself. The therapist has noted this at various intervals throughout the day, so it is not just a 30 minute show. The TV is basically baby sitting the kids. Funny thing is, when I go to pick Brandt up, the TV must have been tuckd back away.

Next--a really huge deal--the therapist indicated that the sitter had two children in high chairs for her entire one-hour session--not for eating, but to keep confined. That ate away at my heart--the idea of my child sitting in a high chair all day just to be out of her hair. It killed me, ate away at my faith, and shook me to the core. No way that my child was going to be restrained in a high chair while that lady sat on her ass.

The therapist also indicated that toys were never out. Books were nowhere to be found. Children weren't being engaged, and they certainly weren't learning. They weren't receiving any sort of attention or stimulation. Brandt was in an environment that would make all of his cognitive and communication advancements begin to regress.

And, yet, I had already had my own reservations about the quality of care. Brandt hadn't been himself. He was coming home hungry, thirsty, tired, and grumpy. He wasn't my sweet, happy boy. Dropping him off was miserable. He would do the worst, most pathetic pouty-face and start to whimper. When I would carry him in, he would wrap his body around me and not let go. It truly killed me. So, for the past few weeks, he had been staying home on the days Darrin was off. 

That phone call from the therapist was the final push, the last straw. I was outraged by her lack-of-care, but mainly I was heart-broken that I had left my child in the care of such a neglectful monster. I was mad at myself as a parent for not doing something sooner. But, that was it. Not another day. No way in hell could I send my child to stay with such a monster for even another minute. 

The next couple days he stayed at home with Darrin while I tried to figure out what to do. I was a mess--hardly ate or slept. My mind could not rest until my heart foundpeace.  What was I going to do with him? How could I trust another stranger? How could we go to another germ-infested daycare? Where could I place Brandt that would allow me peace of mind and Brandt the ability to continue to learn and grow in a nurturing environment?

Thankfully, a good friend agreed to watch Brandt for the next week while I searched for a happy resolution. Brandt was in heaven, being able to play with his buddy all day. They did costumes, fought monsters, and built a house for a cardboard box. Finally, my happy boy was back!

And, then came the resolution. Brandt's old sitter, who had been on maternity, did a trial to see if she could handle him again. After the trial, she agreed to take him. It was a huge stress-relief. Finally, peace of mind. Comfort. Certainty. Serenity. Sleep. 

So, today, he started back with the old sitter. It was like he never left. And, a normal life is restored once again!

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! 

Small Summer Setback

Dear Faithful Followers,

I do appologize--I have not been such a faithful blogger. It has been over a month since my last blog. Partly, words just don't flow so freely. Partly, it is easier to ignore than face.

With summer upon us, Brandt will be back at home with me! I am so excited to have all of the summer to enjoy him being my little man. I had been talking big plans for the summer, adopting a schedule of events to help us keep a fun routine. Perhaps, beach on Monday, park on Wednesday, pool on Friday, and daily walks around the neighborhood! Of course, then there is always backyard slides, basketball, t-ball, and the kiddie pool.

I had big plans for this summer--and it all sounded so good. That is, until I was faced with a reality check. Therapy. Somewhere in my schedule of letting Brandt be a crazy toddler, I have to make way for speech therapy and physical therapy. Pow. Reality hit my like a ton of bricks. I had completely forgotten about the weekly demands of therapy. How could I have forgotten. But, a quick reminder put my distractions back in check.

It all started with a simple text. The physical therapist texted me to remind me that we would need to setup a schedule to meet at my house over the summer. She also continued with the skills that would be working on--with special attention to Brandt's balance and walking.

True, Brandt is walking. In fact, he never stops walking. I cannot even get this kid to sit down to eat or watch a tv show. He just loves being up and exploring the world around him! Still, his walking skills aren't so great. He often loses his balance when walking on uneven surfaces or running. Over the past months of bloody lips and busted gums, I have noticed that his lack of balance is due to his uncoordinated movements. Instead of bringing his legs striaght out in front of him to take steps, he almost does more of a waddle. He slightly swings his legs around the slide of him to move forward. Even more so, he does not walk evenly on his feet. In fact, if he walks around barefoot on abrasive surfaces (sidewalk, concrete, etc), the balls of his forefeet get all cut up. I guess he tries to grib the ground with his toes, instead of letting his whole foot help with balance.

So, yes, definately have to make time for therapy. This is just a part of our reality. During the school year, it is one of those "out of sight--out of mind" things. I see that Brandt falls, but I dismiss it as him stumbling from overexcitement. And, honestly, the kid falls like 20 times a day, so we have kind of learned to ignore--what doesn't kill you only makes you stronger, after all.

I don't see the weekly therapy sessions and our communication is sporadic at best. I guess I have just came to terms with it all and accepted that HIS normal is OUR normal. Sometimes, it is just easier to accept things the way that they are, rather than to make yourself crazy in search of answers.

So, in acceptance, we have moved forward. No longer are we driving back and forth to Miami Children's Hospital. No longer are following up with specialists and seeking a diagnosis. I have decided that a diagnosis is not going to change things, nor is it going to make things better. The only thing that is going to make things better is family support and therapy. So, that is our route, our pathway to success. We just continue to work with him and have high hopes for the future!

Flashbacks and Fast Forward

High fever, body sweats, wet cough, runny nose, sleeplessness.... A tough time every parent faces many times throughout their child's life. And, yet, one of the scariest and most dreaded. Never something anyone can get used. By far, the most exhausting.

So, when Brandt got sick two weeks ago, I knew we were in for it. It all started with him refusing to eat. The next day, he wasn't eating, drinking, or napping. We were literally giving him Pedialite through a medicine dropping, two teaspoons at a time. Then, came the cough and runny nose. And, finally the soaring fever. He was miserable and exhausted. It was a restless house, and when his fever soared to 104.9 in the middle of the night, panic struck me like a swift bolt of lightening. It was an all-too-familiar feeling still fresh in my mind.

Flashbacks struck my brain, sending painfully horrifying memories of the last time he'd been sick. All I could think was, "please, not pneumonia." *STRIKE* "Hope he doesn't have to be admitted again." *STRIKE* "I can't do this again." Flashbacks continued to strike one after another. IVs. Blood work. Oxygen. Monitors. Ahhhh!

His fever continued, despite Advil, Tylenol, and cool baths. Stress was mounting. Sleep was none. We'd already been to the doctor twice and had him on an antibiotic, but I was desperate and concerned, so to the hospital we went.

They did all sorts of tests--flu, strep, RSV, urinalysis, blood work, X-rays.... And found nothing. Oh, but they did manage to spray me with blood from the IV--which was crazy. He soaked through 3 gauze pads, too, before he finally clotted--which was even more crazy. But, after 5 hours in the ER, we were sent home and told it was just a nasty virus.

The week of hell continued in pretty much the same restless fashion. We continued to monitor his cough and breathing, but we were reassured that it would run its course and be ok. And, when he finally started napping again (a week later) we knew we were on the road to recovery. Thankfully, once the napping started again, eating and drinking came, too. And, it was fast forward to recovery!

Thankfully, he is my happy boy again!

Dancing in the Rain

Nothing could be more perfect than me and my boy on a beautiful, sunny day. But, life isn't always smiles and sunshine. Life is about the climb, that fight to makes every day the perfect day. I have found that my day can always be perfect if I don't let the circumstances define the situation. It's all about running from the lightening and learn to dance with the beat of thunder, holding my head high and singing in the rain. And, if my spirit remains strong enough, I can hang on for the shimmer of sunshine when the rain is gone.

And, so, I press ahead with each perfectly imperfect day...

Brandt has had a bit of a rough spurt lately. He got a bloody nose on Tuesday when he was trying to dance to "Ring Around the Rosie." That was followed by tripping into the coffee table and a crash on the floor on Wednesday. Poor kid. His falls, paired with his anemia, Always seem to leave him with some pretty yucky bumps and bruises.

Thursday was the biggest fall. When I got to the sitter, the two of us were talking while Brandt was playing on the patio. Suddenly, Brandt ran to me crying. Poor boy missed his mommy, or so I thought. I comforted Brandt and we left soon after.

But, when we got home and put Brandt in the tub, we quickly knew something was wrong. He was screaming bloody murder. He would not stop screaming. Right away, Darrin found that Brandt had a skinned hand and knee. I went in for a closer look, and discovered that Brant's hand was blistered-- it was badly burned.

After talking to the sitter and putting together all of the pieces, we think Brandt was trying to pet Eugene, the tortoise. Unfortunately, his balance isn't so good and he probably fell into the heat lamp--thus, he skinned his knee and burned his hand. And, this most likely happened while the sitter and I were chatting, when Brandt came running to me crying.

Immediately, we took him to the doctor, and he was treated for second degree burns. The doctor told us that it was very fortunate that the inside of his hand wasn't burned because we would have automatically been referred to a plastic surgeon, if that was the case. Apparently, the palm won't heal because the skin contracts too much as it is trying to heal. So, luckily that wasn't the case. They medicated and wrapped him, and they sent us on our way.

Because we were told he needed to keep his hand clean and wrapped, I stayed home with him Friday. But, as I said--got to run away from the thunder and enjoy the calm of the storm, so I bought Brandt 'Angry Birds' athletic wrap to keep his hand covered and looking like a cool dude! Our three day weekend was filled with fun. Brandt got a new 3T/4T wardrobe, along with beach toys, a bubble blower, and a backyard kiddie pool. We went to the park, and we went on bike rides. We went out for lunch and had a picnic outside. We weren't going to let a little burn hold us back.

But, perhaps the biggest part our weekend was starting to potty-train Brandt. I had bought Brandt a "Cheer for Me" potty a while back, but he hadn't showed much interest in it yet. At the recommendation of the sitter, I bought Brandt an Elmo potty seat for the big boy potty. What a success! He was so excited and laughs every times he tinkles or goes poo-poo. He is so proud of himself, and I couldn't be more proud of him. We had a very successful weekend with very few accidents. I kept telling, "oh, no, you can't go pee-pee on Thomas (Thomas the Train undies), and he thought that was soooo funny!

And though Brandt is only 22 months, I read an article about a school for down syndrome children that potty-train all their students at 18months. Their secret--they make the kids go every 15minutes. I followed suit by putting Brandt on a potty timer. We started at 10 minute intervals and worked our way up to 20 minute intervals. He did so wonderfully--he even went poo-poo (like 6 times) on the potty. I hate to jinx it, but this is way easier than I thought it would be, though my back is killing me from constantly putting him on and taking him off the potty. Hopefully, the sitter can continue to work with him this week, and then I can really buckle down with him next week during spring break. With consistency, he'll be completely potty-trained before I know it!

So, we definitely didn't let his bumps, bruises, or burns get us down--we made the most out of every moment together! Love this kid!

Safety Concerns Save the Day

It's been a week since Brandt's evaluation with Early Steps, but I haven't had a chance to blog until now..... What can I say, life is hectic and complicated.

In all honesty, the evaluation day was an all-in-all draining day. My father-in-law was having complications with his medical status, and we had just left a police funeral, so I went into the evaluation with less fire and fight than I would typically have.

I still don't much have the energy to go into extensive details of it all, but I will say that Brandt lost some services.

The evaluation was a joke. The family service coordinator and speech therapist came in with a kit to evaluate Brandt, but the kit was new, and they forgot the manuals. So, they were sort of "winging it" based off of what they could remember. It was irritating listening to the two of them guess how each of the tests should be performed. It was even more frustrating for me that their invalid test was determining the future of my son's services.

That being said, Brandt's speech services were cut down from once weekly to now just twice a month--and I had to fight to get that. They wanted to remove speech altogether and reassign him back with an Infant and toddler developmental specialist. I was mad because it seems like we took two steps forward only to take two steps back. It was such a huge fight to get speech, and now they want to take it away. And, the kicker is that they still agree that he has a delay in communication, so their logic in removing that service is pretty darn skewed. They told me in the past that they tend to only fund one service as a primary service provider. So, in reality, it all comes down to state funding and budget cuts.

Luckily, Brandt's physical therapy was not even in question or a topic of discussion. It was just a matter-of-fact. When completing the family service plan, the physical therapist said this service would continue due to many safety concerns. We need more consistency in his walking and a greater sense of balance. Thankfully, his safety concerns saved the day and helped him to continue services with that.

Still, there is a scary reality in that fact--safety concerns. Some days, Brandt is such a mess--tripping and falling every other step. This week has been a rough week for him with that. He has a bruise on one side of his head and a knot on the other. He has a gash under one eye, and he got his first bloody nose this morning. The fact of the matter is that I often fear he is going to have a serious fall that is going to leave him in bad shape. In my mind, it is a very valid and serious concern that I often contemplate. Brandt has no fears and knows no boundaries, and I worry about that--especially with him taking dives off the couch and tripping over his own feet. He is just so dangerous. Definitely, safety concerns.

Today's bloody nose left me in a funk. I wanted so badly to take Brandt home and just hold him, but reality demanded my presence. I wanted a friend to just listen to my frustration, but instead I got a history lesson on nursery rhymes. It I hard being a parent when no one hears or understands my concerns or feelings. Somehow, I just have to find a way to be emotionless and just accept life as it comes, but I so desperately wish for just an ounce more of understanding.

One day, some day, some how...

Finding the Shortfalls

Brandt's annual evaluation with Early Steps is tomorrow, and I am so anxious and nervous. I don't really know what to expect, as I am not really sure what the therapists will say and how they will chart his progress.

He has definitely made lots of gains--I just hope that it is not so much so that they exit him out of the program. In my logical brain, I know that Brandt is still not where he is supposed to be, yet I feel like I need to prepare a long list of his delays to fight my case. In my logical brain, I am sure the therapists see all of these same delays, and yet I can't help but worry. I had to fight so hard to get Brandt services; I don't want anything to jeopardize that.

And, now, I feel compelled to spell it out to all of you. So, I pulled up the 22month old Ages and Stages Questionnaire, and here goes:

Communication:
Does not identify objects when pointed to and asked, "what is this."
Does not identify seven body parts (nose, eyes, ears, mouth, etc).
Does not correctly use "me, mine, I, and you."
does not say 2-3 words in sequence that represent different ideas.

Gross motor:
Des not kick a ball forward.
Does not run well without bumping into things or falling.
Does not walk up one or two steps while holding onto railing by himself.
Does not jump with both feet off the floor.

Fine motor:
Does not eat with a spoon so the food does not spill.
Does not stack 6 blocks (or two for that matter).
Does not flip switches off and on.
Does not string small items, such as beads on a shoelace.

Problem-Solving:
Does not imitate lining up blocks.
Does not pretend objects are something else.
Does not imitate drawing a straight line.
Does not turn bottle upside down to empty after a Cheerio is put inside.

Personal-Social:
Does not eat with a fork.
Does not drink from a cup or glass with little spilling.
Does not pretend to take care of a doll or stuff animal.
Does not steer push toy around objects.


So, well, yeah, that pretty much sucks. I probably shouldn't have just put myself through that. That was painful for me and irritating for Brandt. I'm noticing that there were four shortfalls in each section, but it is fair to note that there were also two things in each section that he was able to do. I wonder if I pulled up a 20 month questionnaire, how would he score? How far would I have to go back to catch his delay? Unofficially, I believe that he is about 6 months delayed across the board. But, maybe tomorrow will give me a better idea on where he is at and what more I can do for him.

Fingers crossed that tomorrow is not another endless battle.

Pulling my HIPAA

I am one irate mother tonight, and someone is sure to hear my wrath tomorrow. Take heed, Early Steps, you just irked the wrong mother.

But, maybe it would help if I gave you a little background with the straw that broke the camel's back.

Over the past month, I have already been rubbed the wrong way on both ends--meaning speech and physical therapy. Apparently, both therapists gave my babysitter their take on what they "think" is wrong with Brandt. One referring to Brandt as possibly being autistic, the other believing him to have dyspraxia (aka: clumsy child syndrome). When the babysitter told me that the therapists shared this with her, it rubbed me the wrong way. Brandt's medical status is no one's business but mine and Darrin's, and the HIPAA patient privacy act tends to agree with me. Furthermore, it annoyed me that they would share this with the baby sitter but not with me. And, I really don't think that "therapists" are qualified to make medical judgements, either. But, I didn't want to be one of those mothers that is so far in denial that they cannot accept reality, so I took it in and let it go.

But, today, was the final straw. I was talking with the babysitter, and she informed me that Brandt's annual evaluation with Early Steps would take place next week at her house. Flat out--I was pissed. Words can't even touch the amount of anger that was surging through veins. The babysitter should not be the one informing me of this evaluation--my family service plan coordinator should be. And 'I' should be informed--not the babysitter. My presence should be requested, if not required. It is just damn ridiculous. I am his mother--I am in charge of his care. I am the one who has vested interest in the services he receives. I am the one who is with him and knows what he can and can't do. I love my sitter, but there is no way in hell that I am going to let the fate of my son's future lie in anyone's hands. I WILL be there for that evaluation--mark my words, I will.

In the meantime, I left a voicemail with my family service plan coordinator at Early Steps. Believe me, she will be returning my message tomorrow, or I will be on the phone with her supervisor. She does not want to mess with me because I will file a grievance with Tallahassee so fast. I am not some undereducated mother that is unaware of state and federal guidelines. I am very aware, and she will know just how aware tomorrow.

God help this screwed up system. Better home I sleep some of this steam off before my phone call tomorrow.

Naturally Perfect

So, this has come up in conversation several times in recent months--so I finally decided to share it with all of you.

When Brandt was born, it was a miserable time for me. I wasn't depressed or anything like that. I was just exhausted, overtired, pained, and slightly hormonal. The first two weeks were the worst. I swore I was going to leave Darrin and never have another baby again!

Brandt had jaundice and wasn't feeding as he should. Wanting to do the best for him that I could, I chose to do the natural way with breast feeding. The doctor told me that proper feeding and light exposure to Vitamin D would help rid Brandt's body of the jaundice, but he was having so much difficulty with feeding. He would literally take over an hour to nurse. Darrin was all over me about feeding Brandt, but he just couldn't latch. But, then, when he would finally nurse, he still wasn't latched correctly, and it just left me sore and cracking. We gave him indirect sunlight several times a day, but his jaundice levels were still not dropping as they should. With increased pressure from Darrin about more feeding, I finally decided to stop nursing.

Immediately, I jumped to the next best alternative--I pumped my milk. This ensured that Brandt was taking in plenty of milk to clear his jaundice, which it quickly did, and he was still able to get the immune support and natural vitamins that only mommy's milk could provide. Still, with already being cracked and bleeding from Brandt's poor nursing, this did little to help me. I mean, I was able to heal because I didn't have to worry about improper latching, but every day of pumping during the healing process was pure hell. Every minute of pumping felt like absolute torture, and I thought about stopping every time I had to pump.

Still, I continued to pump around the clock. Unfortunately, around the clock meant that every time that Brandt took in a bottle of pumped milk, I would pump again. So, 30 minutes to feed my lazy eater with a hearty appetite, 15 minutes of rocking him back to sleep, followed by another 30 minutes to pump and store the next bottle of milk. It was exhausting and miserable, and with only an hour and a half (maybe) of sleep in-between, it was a very defeating process.

All my friends told me to nap when he would nap, but there was never the opportunity. Brandt was colicky, so he would literally only sleep in my arms. When I'd lay him down, he'd be up 10 minutes later, and I refused to sleep with him because of all the risks. After three months of utter hell, I had accumulated a stockpile of milk in the freezer. It was finally time to go back to work, so I stopped pumping. Oh, what a relief it was. Finally, a little more time to sleep!

But, time saved from pumping milk was soon spent making homemade baby food. Again, I wanted Brandt to have the best, most natural food. I wanted him to get plenty of nutrients and a large variety of foods.

And, despite all of my best efforts, Brandt still had delays. I always felt like nothing that I did was good enough, or right. I couldn't breastfeed properly, and I naturally felt like I was doing something wrong. Brandt was colicky until almost a year, and I felt like I wasn't meeting his needs. Even after a year, he was still a crankster. Brandt wasn't meeting milestones on track, and I thought I wasn't doing enough with him. Through it all, I was always looking at what 'I' was doing wrong instead of identifying that something else could be wrong.

But, since that crazy time has passed, I have learned that maybe it wasn't all my fault. We found out a couple months back that Brandt has a short lingual frenulum(tongue tie), which the speech therapist told me would have caused poor feeding. Other parents I know with special needs children told me that they had the same difficulty, and that gives me some relief. But, also, today another friend told me how proud she was of me for keeping up with all of the pumping through the sleeplessness and pain so Brandt could have mommy's milk for the first six months--which made me feel even better because I never really saw "not breast feeding" as an 'option.'

Of course, the colic was reflux, and Brandt took Zantac from four months on for that. And, then, more recently we found out that he also had a hernia that was also probably causing him some discomfort. So, maybe the colic wasn't colic so much as it was the doctor not listening to me and looking further into the issue.

And, maybe I did do everything for Brandt that I could. Maybe, he has some sort of delay that is going to require extra push and isn't so easy for him to naturally meet milestones.

Anyway, what I am getting at (or, was getting at in my conversation with friends) is that I probably made things way more complicated than they needed to be. When Brandt wasn't latching, I could have just pumped a few bottles during the day and supplement with formula, or just switched to formula all together. I didn't have to go to such excessive lengths with the homemade food--I could have just bought Earth's Best or Gerber and used that extra time for resting.

I spent three months trying to teach Brandt to bang two blocks together, and one day he picked it up out of nowhere. And, we have spent the past ten months trying to get him to stack to two blocks, and he still won't do that. So, for what, am I going to these lengths? Maybe I just need to learn to help and coax, but not drive myself crazy with all the little details. Sometimes, I just need to focus on the big picture and make the most out of every minute.

So, that is my advise to every new mother: Natural does not mean perfect and everything is not going to come naturally perfect. Enjoy what is for all that it is.

Shifting Numbers

Today Brandt had his 18mo well-baby visit. And, yes, he is already 20 months, but somehow we missed scheduling it. So, better late than never! But, anywho, the appointment was both necessary and productive.

First off, there has been an issue that I thought important to address with the doctor. Brandt has been having about six bowel movements a day for the past six months--although some days as much as eight. And, I'm not talking formed, solid poop neither. These are very soft, loose bowel movements--you know, the gross kind that'll leak out the sides or run up the back if you don't get it changed right away. So, Darrin told the doctor. And, apparently, that is normal according to the doctor. And, even though the doctor says it is normal, I'm still not real confident with his opinion. It just seems like a lot of you-know-what to me!

But, onto better news... There have been some great shifts in Brandt's numbers. When Brandt was born, his head circumference was in the 40th percentile, which did understandably concern me. Over the past 20months, however, his brain has been doing some major growing, and he is now in the 89th percentile--talk about growth! Brandt's weight has seen some improvement, too. Having such a hearty appetite, I am proud to report that he actually went down from the 99th percentile. Brandt actually weighs nearly two pounds less than he did a few months back. And while weight loss in toddlers typically is not good, for Brandt it is. It is a sign that he is in an environment that encourages much more physical movement, and he is able to maneuver much more freely now. He is gaining more motor skills, and he is eager to use them. Brandt is now weighing 29.10lbs, and he has dropped down to the 91st percentile! Of course, he's always had some height, now standing at 34" tall in the 72nd percentile. He will be riding the coasters at Disney before I know it!

Of course, as is the story of my life, Brandt had the Hepatitis A vaccine today, and it didn't leave him feeling so well. Towards the end of the day, the babysitter texted me that he was running a fever and wasn't really eating. He was uncomfortable and had difficulty napping, too. I had Ibuprofen in the diaper bag for her to give to him, and that seemed to break the fever. I picked him up a Happy Meal for the ride home and he inhaled it, probably since the ibuprofen had just kicked in. He came home and played for a bit before the nightly bath and medicine routine. He nearly fell asleep during his breathing treatments at 6pm, but he did crash in my arms right after it was done. Poor guy. Hopefully we can both get a full night of sleep tonight and be feeling 110% tomorrow!

Step in the Right Direction

I think working parents everywhere can relate to this.

There comes a point where the nightly routine becomes exhausting, or so rushed. It's work all day, and then the hustle all evening. For us, this means work til 4:00pm, pick up Brandt, home by 4:45, snack, two breathing treatments. Already 5:30pm. Bathe Brandt, cook dinner at 6:30, feed Brandt, eat cold dinner for myself after 7pm, Brandt's nightly oral medications, and put him to bed by 7:30. Then, it's time for me to shower, pack Brandt's bag for the next day, and make my lunch. Sit down around 8:30, maybe grade some papers or reply to some e-mails, turn on some TV, fall asleep on the couch, and REPEAT ALL OVER AGAIN until Friday.

And, I know I am not the only parent who has the night routine down to a science. Still, sometimes, you need a break from the routine. So, tonight I decided to just put Brandt in the shower with me. He had such a good time, and he did good with balancing on the slippery tile! He had a couple slips, but his protective reflexes were great. I am so proud what a big boy he has become!

And, speaking of big boy--Today Brandt did speech, and he did such a good job. The speech language pathologist worked with him on the words "milk" and "cookie." Brandt has such a difficult time verbally communicating his needs that he often throws temper tantrums. It is a nice step in the right direction if he can start to communicate to me these needs/wants, and today he was able to use those two words appropriately.

I am also so proud when I know he works so hard to gain a new skill. One proud momma today!

Paying for 2012

Well, 2012 was none too kind to us. Unfortunately, we will be paying for 2012 well into 2013.

2013 has greeted us with a series of medical bills and collection calls. But, to gain a true understanding of just how hard 2012 impacted us, you have to see it from a financial standpoint.

In 2012, Brandt had
49 Doctor's Appointments,
8 Outpatient Procedures,
10 Emergency Room Visits,
14 Lab Workups with close to 50 different tests
3 Days Impatient Hospitalization, and
65 Prescriptions Filled

Bills totaled: $146,145.00
Insurance paid: $52,954.29
Out-of-Pocket Expenses: $6,200.97

Oh, but wait, that does not include travel expenses.

We have spent approximately
$700 on gas
$150 on 1 night hotel stay
$500 on food
$540 in lost wages

So, now we are looking at closer to $8,090. Let's not forget that all of those are Brandt's bills ONLY. We had an additional $1,953.70 in out-of-pocket expenses for the rest of our household. So, in 2012, we got hit with a grand total of $10,043.70. That is an average of $836.98 in out-of-pocket medical expenses per month. And, who budgets for that?!? Yikes!

I never mention the financial end of Brandt because I know that we are fortunate that it is not worse. I know it could be much worse. And, it just doesn't matter. He's my kid, and I will do everything for him that he needs. Money should never be a factor in his care. You do what you have to do, and you find a way to make it all happen. I wouldn't even bother mentioning it now, but it has become a very consuming part of my life in recent weeks, and it is an honest component in the journey of raising a child with special needs.

We generally tackle each bill as they come, either before the procedure or at the time of the visit. However, sometimes we have to wait for hospitals to submit the bills to the insurance company, and wait for our portion to be assessed.

And, so, after the waiting process, we got hit with a very rotten situation where the insurance company was not covering the ER physician's bills for three separate visits--hitting us with $1,180.56. Apparently, the ER physician was out-of-network, despite the fact that Brandt went to an in-network hospital. Go figure. I've been going round-and-round with the insurance company for two weeks. Despite the fact that the physician's medical biller told me they would put the account of a 60 day hold, that did not stop them from sending us into collections. And, at the same time, I got billed $528.75 for Brandt's hospitalization and ambulatory transportation from when he had pneumonia; it was an expected bill but bad timing. So, I have close to $2k in outstanding medical bills.

Ordinarily, this would not phase me. I am a logical problem-solver, and I always find a way to work things out. But, it really is a matter of poor timing. All of this hit at the same time as the passing of Darrin's mom. Due to unfortunate circumstances, she did not have any insurance and we were left covering half of the funeral expense. Coping with the financial and emotional responses to this have been overwhelming.

And then, BAM, we get smacked with an on-slot of medical bills and collection calls.

And, as if that is not enough, suddenly everyone around me is trying to play doctor and tell me what is wrong with Brandt. Part of me feels like it is really not their place to give opinions or size-up my kid, while the other part of me thinks I need to be more receptive to people's thoughts to better guide the medical decisions and care that I choose. Yet, it is hard to hear--no matter how many times I hear it. And, unless you have a special needs child, you will never truly understand the depth of pain you feel for your child when words like that are uttered. Heart racing, face flushed, palms sweaty, exhausted, drained, weakened, defeated, back against the wall.... Like someone beat me up and left me for dead--heart ripped out and stomped on. It truly is an indescribable feeling. He is my precious boy and that is all that matters. And, I can't even get into the details as to what exactly was said because it hurt that much, and I just can't relive it today.

And, so, all I want to do is lock myself in a room. No lights. No noise. No one around. And fall to my knees. Back against the wall. And just pray.

And, maybe this is the time when I need prayer the most.

Dear God, Help us find faith to sort through the things we can't make sense of or understand. Help us find comfort in knowing that you have taken a good one and given her comfort. Help us find strength to keep pushing forward. Help us to find a way out of the darkness and back into light. Give us endurance and guidance to see what is best, and cast away our fears of uncertainty and judgement. In you we trust. Forever and Always. Amen.

Off to a Good Start

2013 is already off to a great start!

Wednesday, we headed down to Boynton for Brandt's post-op appt. Everything seems to be healing quite nicely, though he's going to have two sizable scars. The doctor did mention to us that we needed to watch the little bubble he has at the end of his upper incision. The bubble is where the doctor tied the knot on Brandt's internal stitches, and it should go away, but if it starts to enlarge or discharge a fluid he would need an antibiotic. Of course, we do not anticipate this to be an issue, but we will continue to monitor. Brandt still has one more week of restrictions--and it can't come quick enough as he is in this crazy climbing phase! He will have to return to the pediatric urologist in three months, at which time they will better be able to determine if he lost function on that side--something I still can't believe that we have to think about at this age. Either way, the other side still functions normally so he should have a productive future! ;)

After returning from Boynton, Brandt got a quick bite of lunch before speech. Ms. Jo was able to come out to my house, since I was home for winter break. Ms. Jo started out be commending my new choice in childcare and complimenting my sitter. It made me feel good that she feels this is a better environment for Brandt. I definitely value the opinions of both Brandt's therapists because they see him interact in the environment, whereas I merely pickup and drop off. So, it was nice to hear that she feels so confident in our sitter, as we are as well.

And, so began therapy. It is always nice when I can sit in on a session so I can learn new activities to do with Brandt that will better enrich his language acquisition. Certainly, therapy is a key element in his development--but it is not a cure-all. Therapy is only one hour a week. If I am not reinforcing Ms. Jo's skills with continued practice, therapy would be useless. Early Steps is all about reinforcing skills in the natural environment, and I want to make sure I am always doing my part. So, I was able to observe some of her current techniques, address some of my concerns, and highlight some of Brandt's growth.

That last thought deserves it's own paragraph!

I am proud to report that Brandt is doing amazingly! He is acquiring new language skills every day, and he is so eager to learn new things. He loves books, and he constantly points to pictures in his book and shouts "ma ma," so as to ask what the picture is. He really wants to know what he is looking at and what the characters are doing. And, we have been working on our animal sounds--he can identify the noises of a dog, cow, and lion with an "woof, woof," "moooo," and "roarrrr!" It is so stinking cute! He can identify nose, belly button, hair, and ears. He is even picking up even more simple commands by putting trash in the garbage, placing dirty clothes in the washer, and placing dirty dishes in the sink. He loves to help shut doors and close the dishwasher. He will even alert me by screaming "doo doo" if the dog has an accident--which is just hilarious! He is such a little sponge, and I plan to fill him with knowledge to soak up!

Here is to a fresh start with better to come in 2013!