The seizure monster has returned

For the past few months I noticed Finn doing a weird twitching/pulsing with his right arm. It happened frequently during the day and it was always his right arm. It had me confused.. I found I could stop the pulsing if I put weight on it. So I thought it was just tone related. I got opinions from his therapists and doctors and they too thought it was tone related....until I asked our neurologist. Something she saw concerned her so she suggested we do a 24 hour EEG. Which I was actually interested in doing since Finn hasn't had an EEG in 3 years. Finn sometimes does random movements some days that make me question what is going on in that little head of his, so with a long term EEG I could get some answers to some of my questions. So we set up the 24 hour EEG for early December. For those who have never had the pleasure of experiencing an EEG, it takes an hour to put all the little electrodes on the head. Usually Finn hates this process and it's filled with tears, but not this time. He was a perfect little angel. Then once you are in the hospital room the nurses give you a button that you push every time you see the movement that you suspect is seizure activity. I filled up 2 sheets front and back in the 24 hours that we were there. That is how often Finn does these twitches in the right arm. Right before we leave Children's they tell me that they do see seizure activity, but that they can't give me definitive answers until they have the doctor analyze the whole EEG and that we might want to think about changing up his meds. That is how they discharge us! It's like Ok we will go home and wait for 2 weeks until we can see the doctor and Finn will continue to have these seizures...awesome. 

 


Two weeks later we see our neurologist. She tells me the reading of the EEG was kind of "murky" but that they definitely see seizure activity. He is experiencing 3 different kinds of focal seizures throughout the day. Which basically means that there are 3 different areas of the brain that are misfiring, and when that happens he experiences the arm twitch. However, not every time his arm twitches is a seizure. So it is very confusing. During these twitches, which only last a half a second, Finn is totally aware and engaged and talking through them. Which goes against typical seizure activity! So basically you can't tell between just an arm twitch and a seizure. Leave it to Finn to do another thing uncommon. We increased his Topamax but haven't seen a change in the frequency of twitches.

Finn has been doing amazing things in the last few months. I feel like he has been having a cognitive burst! He's nodding his head, he's walking like a champ in his walker, he is doing amazing things with his communication device, and actually started being more vocal in trying to say new sounds...he's been doing amazing! The neurologist let me know that these types of seizures are not doing any damage to his brain. It's apparent that they are not affecting his cognitive abilities and they don't appear to bother him, so instead of continuing to increase his medications in the hopes to stop these twitches all together (which may never happen) we should keep everything the same. Until it appears that these seizures are interfering with his life and/or learning we don't change anything. and I am in agreement with her. And plus I don't believe that I will ever be able to totally stop Finn's seizures. I feel like we will always be dealing with focal seizures because of his brain damage. But he is in great spirits, and he just continues to amaze everyone around him <3

The feeding struggles continue....

Ever since Finn got the g-tube placed in March, he has been having problems keeping his feeds down. There has been a lot of vomit in our house the last few months. It is really frustrating because he never used to be the kind of kid who would puke, but now....he is the pukey kid. Before the g-tube was placed he would be able to eat 7 oz of pediasure by mouth...now he can only tolerate 5 oz by tube. Anything more and we risk the chance of vomiting. So after doing some research and talking with other moms...I have decided to switch Finn to a blended food diet instead of feeding him Pediasure. It's apparent that he can't keep the pediasure down, and if you keeping throwing something up you don't want to keep eating that particular food. So with the help of our doctor and our nutritionist we have been feeding Finn a high calorie diet consisting of typical foods blended together with our magic bullet and then feeding it through his tube.  We have been doing this for the past 2 months and everything has been going so smoothly. He has quit vomiting, constipation issues have ceased, and he seems to be enjoying mealtime more. He eats 4 meals a day: a breakfast, lunch, snack (which is the same thing he eats for lunch), and dinner. It has been going really well. My grocery bill has gone up because I have to buy the high calorie breads, milks, yogurts, and peanut butter for him while Ethan and I eat the lower calorie foods. But it is totally worth it. I make enough of the different meals to last me for 2 days before I have to blend up some more batches. Since I have started doing this I have realized that I need a better food processor. The magic bullet is great, but I need something that is strong enough to break down meats. Right now Finn is getting his protein from eggs and peanut butter...I have tried to blend chicken and steak in the magic bullet and it always ended in disaster....clogged tubes, broken extenders, and food exploding over Finn and I. I expressed these frustrations with Finn's doctor and she decided to write a prescription for the Vita-mix blender. It is a very expensive high end food processor that will allow me to incorporate meats into Finn's diet. The cost of this blender will be covered under the waiver money that Finn has been granted. Now I just have to wait for all the paper work to go through...which can take months. But I am in no hurry...I have gotten pretty creative with the meals I plan for Finn. It was hard at first because I can't get over putting all the food together in 1 batch. But then again, I am the kind of person who keeps her food separate on the plate...none of the foods can touch each other. Once I got over that it became easier to think of things to put in the blender.

We just had a check up yesterday with our doctor and Finn has gained weight since we started this process. She told me that if we couldn't prove that Finn could gain on this diet then she would have to take us off of the blended food diet. Which kind of pissed me off. I will decide what to feed my kid. He's gaining weight, seems happier, is no longer vomiting or constipated. I will not go back to feeding him Pediasure. But I am glad I didn't have to have that conversation with her. But if they do try to tell me not to feed him this diet I will have no problem challenging their opinion.

A different kind of post.

This blog is dedicated to keeping people updated on Finn's accomplishments, progress, struggles, etc...I think it's so important for people to hear all the successes and obstacles Finn faces, and also maybe put a face on the diagnosis of cerebral palsy if you have never met anyone with CP before...

This blog will continue to follow Finn but this post is dedicated to me; my struggles over the last 4 years. This is a post I probably never would have written, but it's only now that I'm finally healthy enough to realize just how hard I was handling being a first time mom let alone a special needs mom. 

I've have struggled with depression ever since high school but never really got treated for it. I would go on medications and then just never refill them. I would start counseling and then stop...always thinking that I was too strong for that and could overcome it myself. It wasn't until I was 7 weeks postpartum that realized I was not strong and I needed help. Finn cried 24/7 in those days and slept a total of 6 hours a day only sleeping 2 hours at a time. I was exhausted and stressed out. I wanted to quit. Throw in the towel. I wanted to die. I called my doctor's office and told them I was suicidal. I never wanted to hurt Finn. Let me stress that, how could I? He was so pitiful and sad and it wasn't his fault that I was failing at being a mother. Luckily my doctors office let me come in right away. I saw a random doctor in that practice who just let me sit in a room and cry by myself for a hour. The only words of comfort she offered me was that parenting is hard and that I looked great because I had dropped 25 pounds since delivering. She handed me a prescription for lexipro and left. 

I don't remember if the anti-depressants worked at the time, because of everything we were going thru and dealing with. But I do remember that this was a time when there wasn't a generic form of lexipro. So every month I had to pay $25. Then Finn started needing medications and specialty formulas, multiple doctor visits where I had to pay a copay every time. Ethan and I struggled so hard financially. We never anticipated living on a single income. We had to start really cutting back, so I decided to quit refilling my prescription. I had been on the antidepressant for about 2-3 months and felt well enough to quit them and not worry about wanting to harm myself. 

Although I didn't feel suicidal anymore, I still didn't feel like myself. I never wanted to leave the house, but if I had to I would have severe anxiety. Maybe it was because Finn screamed his head off whenever he was put in the car seat and/or stroller. Or because most of the time I was by myself with Finn and it was hard to smooth him. So I left the house as little as possible. And when I did I really only felt comfortable going out with Ethan. I started to withdrawal from friends. Especially local friends who also had children around Finn's age. I still was very angry about what happened to Finn and I. I resented the friends who had positive birth experiences and healthy children. So I would cancel plans or ignore calls and texts. I didn't push away so much from friends who didn't have children, but I still found myself being angry and resentful of them too. Hearing about their successes at their jobs or traveling or new friends they have made. I know admitting this makes me sound like a horrible person, but I wasn't right. I was sick. I always ended up feeling worse about myself after talking with a friend so eventually I just stopped talking to people. 

I cried on a daily basis. Cried for Finn. Cried for myself. Cried for Ethan. The hopelessness was palpable. I tried to hide my pain. Put on a brave face, but if anyone would ask about Finn I would cry. I could literally cry at the drop of the hat. 

I ended up dealing with my depression and stress by eating. I put on 50 pounds the first year of Finn's life. It was easy when all I wore was sweatpants and leggings. 

I feel like the past 4 years I have only been existing...I haven't been living. And finally I was able to say enough. I need to start taking care of me. It started with me finding a new doctors; obgyn and PCP. But I was scared. My past doctors have scarred me for life. I didn't feel confident it my ability to chose a doctor. So I was referred to a new obgyn by multiple friends. He was exactly what I needed in a doctor. He took over a hour to sit and talk about my history. I cried like a baby through the entire appointment...having to explain my birth story was still traumatic. The pain was still raw...like I had just went through it instead of 3 years ago. He was the first person to tell me that not only am I depressed but I had post traumatic stress as well. Which is crazy right? I thought only soldiers had ptsd...not a woman who gave birth! Even after he told me all this I still was in denial. He asked if I wanted antidepressants but I said no (still worried about the cost) money was still tight with us. 

It wasn't until this past February that I finally was ready to make a change. I was sick of being so overweight, unhealthy and depressed. So I found a PCP. She also spent a hour with me while I just cried my eyes out to her. She told me the same thing as my obgyn: I'm depressed and suffering from PTSD. She wrote me a script for the generic lexipro and I left feeling like this was the first day of the rest of my life.

It's been 5 months now and I feel incredible! Better than I have in my entire life. Thanks to better eating habits and a more active lifestyle I have dropped 48 pounds, I'm happier, have more energy, and most importantly I am a better wife and mother now. I felt like the past 4 years I was in a fog but now the world is crystal clear. I am mad at myself I waited this long to get help. I wish I would have put my needs before Finn just once and maybe I would have gotten help sooner. I wasn't doing Finn or Ethan any good being as depressed as I was. But it's better late than never. I am writing this post in hopes to help other mothers who are suffering in silence. Or maybe to explain to people why I might have pushed them away when they reached out to me. This was not easy to write. But writing is my therapy so this is just another step in my healing process. 

Sometimes "professionals" are the worst

Yesterday Finn had a follow up with Neurology.  I really didn't feel like going. I almost cancelled. Finn hasn't appeared to be doing any suspicious movements or behaviors that I wanted to discuss with her. But I went mostly bc I wanted to see how much Finn weighed.... (28.8lbs! He's gained over a pound and a half since his gtube placement! And he's not even taking in as much as the "professionals" want him to!)

Anyway, our neurologist was really happy with the way Finn looked/acted/felt. She was so happy to hear about the cognitive and speech progress Finn has had since she last saw him 5 months ago. I was flying high. Feeling good. Then she reminded me that she wanted to reevaluate Finn this visit. I totally forgot. I didn't plan for a 2 hour doc appt. It's getting to be snack time for Finn and I didn't bring food....but I told her since Finn is happy now, let's just start the evaluation and if he gets mad we will just stop and do the rest another time.

In walks this "behavior therapist". And let me just preface this story with, I know she is just doing her job.... going by all the protocols and standards blah blah blah. But with that said this stupid evaluation is worthless and stupid. And I'm pissed I wasted my time and Finn's. But I was curious to see how far Finn has come since the last time he was tested at 11 months. And bc every time I ask a specialist in our little CP world about Finn's cognitive age they always tell me "oh we don't like to put those kind of labels on our kids..." ok fine. But I can't help that I'm curious.  I know his gross and fine motor are bad...that is obvious. ..but Finn is so smart and funny that I KNOW he's way stronger cognitively.
So to satisfy my curiosity we do the evaluation. She administered the Bayley infant development test. Which is part her interacting with Finn and then a bunch of questions I have to fill out that state whether Finn can perform certain tasks or not. Well keep in mind it's now 4:00 pm, Finn just sat thru a 1 hour doc appt, he had school that morning,  hasn't napped, and is now getting hungry....so this "behavior therapist" busts out all these toys and the goal is to see if Finn can track, grasp, hold, play with these objects. Well the only toys this woman has in her suitcase are dumb baby toys like a rattle and a ball. Finn isn't interested in playing with those things. So he makes no attempt to try to play with them. And I tell her that. I'm like those are too infantile for him. He's 4 years old...not 4 months. But it's the only stuff she has...so after about 20 mins Finn gets mad. He's had enough. So she tries to finish the test real quick based on what I tell her Finn can do at home. Then she leaves to score the test.

She comes back looking like she's so proud and that she's going to delivery good news to me. She has told me that Finn has improved in all areas since he was tested when he was 11 months old (no shit) she tells me that his communication skills is that of a 14 month old, receptive communication is 11 month old, and cognitive skills are a 5 month old. Before she can do the fine and gross motor scores I tell her to stop right there. I go on to tell her that these scores are incorrect and bullshit. The last time Finn was tested for communication skills, his receptive communication was 18 months!  And this was when he was 2 years old. And to tell me that cognitively Finn is a 5 month old?? Are you kidding me? I flat out tell her that her scores are wrong. (I don't believe I acted like I was in denial of these results (maybe partly so))...but I ask how she came to these conclusions. And she said she can only score what she saw Finn do today. So bc he didn't reach out and want to play with that stupid rattle he was penalized. I said that they need to figure out a way to adapt this test for kids like Finn who have difficulty moving their body but understand what is being asked of them. She tells me this particular test can never be adapted bc this test is compared to "typical" children his age. EXCUSE ME?? I say to her "Why is Finn even taking this evaluation?" She responds by telling me to see how delayed developmentally he is and then to advise on how to get him the help he needs. ARE YOU SERIOUS?  I tell her I don't need a test to tell me how delayed he is! And then I tell her that this was ridiculous, she wasted our time and hers, that Finn has an excellent team working with him, that I didnt need her help, and that anyone who spent more than 40 minutes with Finn could tell her he would test higher than what she "concluded".

I am not going to let that test hurt my heart. I know what Finn is capable of. But it pisses me off that they felt it was necessary to do that test. I know he's very delayed...his doctors know he's very delayed....so how the hell does this test help???  The only thing it accomplished was making me feel bad.

Minus 2 Tonsils plus 1 feeding tube equals 2 hellish weeks!

Well Finn had his 2 surgeries on March 9. At 8 am that Monday morning I watched as the OR nurses wheeled my baby away from me and into the operating room. I was a wreck. I couldn't stop sobbing. I was scared for Finn. Scared that when they took him away from us that he wouldn't understand what was going on and that he would be frightened. Scared that the nurses and anaesthesiologist wouldn't be able to calm him if he got worked up....scared that something would go wrong with either surgery.  Scared that Finn wouldn't be the same happy little boy he was before he had these surgeries. In the end both surgeries went perfect. Finn did great. It's everything that followed where things got hard...

Finn was sent to the ENT floor for recovery. We spent the next 2 days there. Finn was miserable when he woke up. He was in so much pain. You could just tell he was so confused as to what just happened to him. It was heartbreaking. Thankfully he was on some pretty strong pain killers. The ENT surgeons came to check on him a few hours after to surgery to tell us that we need to start trying to get Finn to eat/drink something. It is important to keep his throat lubricated to help with healing and with pain. As I expected, Finn was just not interested. Who could blame him? I knew he would act like that....that was why I decided to get the feeding tube at the same time. So at least I can keep him hydrated if he still refused to drink or eat anything. But what I did not know was that we could not use the feeding tube at all for the first 24 hours. OK, no big deal...he still has his IV in him. So he can get fluids and his meds thru his IV. At around 5pm I start asking the nurses about getting Finn his Topamax (seizure meds) since it has been 12 hours since his last dose. She comes back and tells me that they do not have a form of Topamax that they can give him thru an IV and that we might have to look at giving him a different anti-seizure med. This was not OK with me. Finn is used to Topamax...we know how he does on it...and I don't want to switch seizure medications for this short hospital stay just because they don't have an IV form. I wanted to speak to someone from Pediatric Surgery (who was in charge of checking on his gtube) to see if we could use the tube for just administering his medications. It wasn't until 8:45pm that we got clearance from Pediatric Surgery to use the tube for his Topamax....and no one from that floor had even come up to check on Finn at that point. It had been 12 hours since his gtube surgery...we had seen countless ENT doctors/surgeons/nurses...but no one from Pediatric Surgery...

 

We made it thru the first night ok. It is impossible to sleep at a hospital. nurses were coming in every 2 hours it felt like to either check vitals or administer pain meds. Poor Finn would finally fall asleep and then someone would wake him up. Or he would finally fall asleep only to be woken up a few hours later screaming in pain. It was so hard to watch him go thru all of that. Tuesday during the day Finn seemed to be in good spirits. He was talking to us and even was able to eat 1/4 cup of jello. Throughout the day I kept asking the ENT nurses about when someone from Pediatric Surgery would come up and check on Finn's gtube site. His bandages still had not been changed and we haven't spoken to anyone about it! I was getting pissed. The nurses kept saying they were paging the docs on that floor but couldn't get anyone to respond. It wasn't until 6pm that night that we saw someone from Pediatric Surgery. She came in...looked at Finn's site....changed his bandages and told us everything looked good. She then proceeds to tell us that we could be discharged tonight if we wanted to. Umm...excuse me?! How do you think we are ready to be discharged?!?! Finn still isn't eating enough by mouth to be discharged by ENT standards and we haven't even used the tube for feeds yet! So we don't know if he can even tolerate feeds yet! I was so livid when they said we could be discharged. I told them absolutely not. We were not leaving. So they said that Finn could start eating via tube that night starting at 9pm. Finn tolerated the first feed pretty well. They gave him 8 ounces in like 45 mins. We thought things were going pretty well...until around midnight. Finn's fever spiked to 102.8 and he started vomiting. It was pretty scary....and I kept thinking about how they wanted to discharge us just a few hours earlier!! Finn was able to settle down and fall back asleep around 3 am. His fever started to come down and we decided to try to feed him again around 5 am. He tolerated that 8 ounce feed just fine. The next morning Finn's temperature continued to be normal and he was able to eat another 8 ounce feed at 8 am just fine. 

We were told we were going to be able to be discharged at noon on Wednesday. But before we could leave Ethan and I had to attend a class on how to care for the gtube. They made us go together and leave Finn alone with an early intervention specialist. Something I wasn't thrilled about. Finn didn't have a great night and the last thing I wanted to do was leave him for a hour. What if something happened? What if I missed the Pediatric Surgery doctor when I still had questions for him? But it was very important for us to attend this class and since they were adamant that Ethan and I had to go together, we left Finn. Our gtube class was fine. Ethan and I left there feeling confident that we could care for it and clean it properly. When we got back to the room Finn was smiling and having a good time with the early intervention specialist. Noon came and went without us being discharged. According to the ENT nurse, Pediatric Surgery had not decided on discharge plans for us yet. She insisted she kept calling them and checking on their progress but was not given a phone call back. So we stayed at the hospital. Ethan and I were able to practice giving Finn feeds thru the gtube and even got to change the bandage with success. FINALLY at 5pm Pediatric surgery was able to throw together a discharge plan for us. Basically the discharge instructions told us to: use gtube for feeds, eventually getting Finn to consume 40 ounces of Pediasure and 100ml of water, keep an eye on the drainage coming from the site (should not be more than a quarter in size on the gauze), if we see the colors red, yellow, or green oozing from the site we should call the doctor. That was it....those were the only instructions we were given about the gtube....

The next 2 weeks were awful. Finn was in so much pain. We kept him medicated with the strong pain killers the next 5 days. Finn continued to refuse eating anything by mouth. He threw up about once a day after being fed thru the gtube, Ethan and I were setting our alarms in the middle of the night to administer pain meds when Finn was asleep. No one was getting good sleep. Then on the Saturday after we were discharged Finn's gtube site began draining way more than they told us was normal. I panicked. I called the pediatric surgery on call doctor who told me that this was normal. I was just to clean the site more often and change the bandages when it gets really wet from the drainage. Alright. That I could do. This was normal apparently. I wish someone told me this. So my panic levels came down. A couple of hours later I check Finn's site and now it is bleeding! I start to freak out again! I wasn't supposed to see the color red! I call the on call doctor again...who very nonchalantly told me that bleeding was normal. Just put pressure on the site. I told him I was not going to put pressure on it bc its already tender and there is no good way to actually put pressure on it! That's when he tells me that if I 'wanted to waste my time and bring him down here' he would look at it. I start to cry. I am on no sleep and I feel like he is totally disregarding my concern. My discharge plans were vague, Finn isn't tolerating all of his feeds, and I am so frustrated! I hang up. I decided that I would just keep an eye on it...deal with it myself until I could speak to his actual surgeon on Monday. Well it did stop bleeding...the drainage started to decrease...and things started to look better. Now I had to determine why Finn was vomiting at least once a day! I was trying to feed him the same about of food he was taking by bottle before the surgery. But for some reason he was not tolerating it. 

Finally Friday came! We got to see Finn's gtube surgeon. He was confused as to why we had this appointment scheduled bc usually he only sees patients 4 weeks post surgery...not 2 weeks post surgery. Then I was telling him about our terrible hospital stay. How pediatric surgery ignored Finn, how we weren't given clear enough discharge instructions, the rude on call doctor...everything. Well, our surgeon was visibly upset. One, we were not given the correct instructions on how to care for his gtube site. In the hospital we were told to leave the tube extender in the gtube hole in hopes to stabilize the hole. However, this was wrong. We should have taken the extender off when we weren't using it. It was actually making his hole bigger! I was pissed when I heard this! I knew Finn was bleeding those couple of days bc he was accidentally pulling on the tube extender! Then the surgeon tells me that he specifically requested that Finn be put on the pediatric surgery floor...not ENT! When I heard this I was fuming! I had been saying all along I felt that pediatric surgery neglected us bc we were on a different floor...and low and behold I was right! Who the hell messed up?! I am so mad! Bc of this mix up we weren't given the proper guidance on how to care for this new gtube and how to introduce food to Finn again. Luckily, our surgeon was awesome and very patient with us and walked us thru how we should go about feeds with Finn. It turns out we were over feeding him. Apparently Finn's tummy can only hold 8 ounces of food. Information that would have been very useful!! 

I have only had great positive experiences at Children's hospital up until this point. I am very disappointed in the way things were handled. I have filled out 2 different surveys letting them know how upset I am with the way things were handled....and how I feel they are not good at overseeing patients who are being cared by more than one speciality. The gtube continues to give me grief. Finn has actually decreased the amount of food he is eating. He still refuses to take anything by mouth. I keep offering him stuff every day. Some days I can get him to take a few bites...other days he gets fed only thru the tube. I am hoping that things will start to improve...its only been 3 weeks since his surgery. Finn has always taken a little bit longer to process things. Maybe his throat is still bothering him...maybe he is afraid to swallow anything because he remembers the pain...who knows. As of right now I feel like Finn was doing so much better before we had these surgeries! 

I've lost the battle of the bottle...

I feel defeated. I feel like I have failed. On March 9 Finn will be getting a feeding tube.  Something I have tried to avoid for the past 2 years. But it has been a battle that we keep losing. Finn keeps growing in height but his weight remains the same. Which means he just keeps falling down the growth chart. Finn hasn't gained any weight in a year. He has stayed at 25lbs. No matter what I have tried...no matter how much butter and oil I mix in with his food, no matter how much carnation powder I mix in his bottle...it just hasn't made a difference. I can't keep doing this. I am tired of giving him a bottle...I have been bottle feeding for 3.5 years. I can't spend 25 mins getting him to eat a bottle and only get him to eat 6oz. I can't keep stressing on a daily basis about how Finn only took 14oz of pediasure when the doctors insist that he get at least 20oz. I am tired of worrying about Finn not eating at school, or at his grandparents house, or out in public because he only wants to take a full bottle from me at home.

So I am surrendering. It took me a long time to get to this place. This place of acceptance of the feeding tube. Once I got past the denial of how much Finn actually needs it. I realize that this will be great for our whole family. Finn will finally have a proper nutritious diet. He will finally know what it is like to have a full belly. When he gets sick I won't have to worry about him being properly hydrated or getting meds in him.  My stress level will decrease because I will know he will be getting enough food on a daily basis and anyone can feed him...it won't have to be just me anymore. I made a pact with Finn when we decided to schedule the surgery...I promised him I would not stop feeding him by mouth. Finn actually likes the taste of food...he just doesn't eat enough of it to gain weight. Just because he will have a tube doesn't mean I am going to stop trying to improve his oral motor skills or deny him the taste of food. This I promised to him.

So wish us luck on this next hurdle!

Powerless

I hate feeling powerless. I hate when things are beyond my control. I never considered myself a control freak until I had Finn.

I always thought that if I followed all the instructions...did all the therapies...put my heart, soul, and energy into doing all of those things everything would get better. Not that Finn would suddenly stop having spastic quad cp....but that it would make a big enough difference that people would notice.

I always feel so defeated after our doctors appts. Finn and I try so hard and all I hear is "he still isn't gaining enough weight for us" "he is still really tight after his latest botox injection" "his head control doesn't look that good" "you have to think about what meds he might need in addition to botox"

I go in feeling good. I see changes in Finn...they might not be noticeable to everyone but I see it. And then to be told all of these things that aren't improving frustrates me. I feel powerless...

The future scares the shit out of me. I try not to think about it for too long bc I always end up in tears and having panic attacks bc of how terrified I am. I worry all the time. Then to be told today that he is still tight after botox and might need additional drugs to help with tone. It scared me. Finn is only 3.5 years old...he's only been on botox for a 1.5 years. I thought it would be years and years before we would be having this discussion since there is only so much botox a person can get....but you want to talk about this now?? I immediately think about the future and what this means for Finn down the road.. 

And I don't know the answer and it scares me....again...powerless.