Secret of a special needs mom

Now that Gesina is getting older and babies her age are gaining more skills, the gap between Gesina and her peers is widening. This means people now look at me a little differently when I'm out and about with my girl. This is going to get much worse as she no longer fits in her infant car seat. Why does that matter? Because now when we go to the grocery store or Target, she has no where to sit. She doesn't have the head or trunk control to sit in the cart. You know what the only solution is? I get to bring Gesina into the store in her wheelchair/stroller combo. Picture me coming at you down the aisle while I push my 15 month old in a wheelchair/stroller and pull a cart. Good thing we both have a flair for the dramatic because we are going to get lots of attention.

But you know what my secret is? That I love my child more than most moms love their child. Gesina is my inspiration, my hero, my survivor and if I end up demonstrating half the strength she has in the last year, then I will have lived a full life. When people find out about Gesina, one reaction is they apologize to me and offer pity about the circumstances of her birth. What they don't realize is that I don't need their pity. I'm the luckiest mom out there because I gave birth to my hero. I pity those who haven't had to fight for their child as much as I have in her 15 months of life. All this fighting for her, all the hazing of 37 doctors appointments in one year, has left me loving this child more than anything or anyone on earth. When Gesina farts and startles herself, I couldn't laugh harder. When she opens her mouth with enthusiasm because she loves banana oatmeal I couldn't be more proud. And when she sends one of her slow smiles towards her papa just because she finds his voice funny, my heart couldn't explode with love any more than it just has. Gesina doesn't have to run faster than other kids or use more words than kids her age for me to be proud of her or love her more. I love her just for her spunk and her audacity to be alive when many have told me should wouldn't make it. Anything she does from here on out is just icing on the cake.

So when you see a mom with a special needs kid, don't assume she is wallowing in self-pity. Look at the moms eyes and you may see that she is just like me. She may have already realized that she too has a secret, that her child is the coolest person she knows and that she wouldn't change a thing about him/her. Gesina may have a laundry list of health conditions that place her in the disabled category, but she is so much more than that. For those of you lucky enough to have met her, she is extremely dramatic, sends many sarcastic messages with her eyes, loves getting hugs and has continuously chapped cheeks from getting them kissed, likes to play "baby fingers" on her iPad with Rufus the cat, and thinks her daddy is the funniest man alive. Just imagine how much more personality she is going to share with us as she gets older!

Long time, no post!

Gesina's one year anniversary from being discharged from the NICU has come and gone (January 27th). To mark the day we did exactly what I said I wouldn't do after her nightmarish Halloween... She had doctors appointments all day. The day started with her vomiting her whole feeding in her carseat. After frantically hosing her and the car seat down, off we went to Milwaukee to see her Physiatrist (Cerebral Palsy doctor). Her CP doctor and therapists have decided it's time to start giving Gesina botox injections... yep, you read that correctly. She had botox injected into both biceps and her hamstrings. The theory behind it is here. I helped hold her down but the needle was pretty thin so she didn't completely lose it. Next, I whisked her off to get her PEG tube switched to a g-tube "button". I had read that this was a rather quick procedure so I wasn't too worried that Gesina hadn't eaten yet and I didn't want to feed her and THEN have the hole in her stomach leak while we changed the button. But alas, the training session lasted about an hour and a half. I kept jumping ahead of the nurse doing the training and she kept slowing me down. After the training, when she found out I was a professor, she finally realized why I kept jumping ahead. She had a script and a set pace and she was going to keep to it! Finally after the training, it was time to get Gesina's PEG tube out... they essentially "rip" it out! Imagine pulling a grape with a tube attached through a whole in your stomach the width of a straw.  Boy did she scream! She was essentially inconsolable for about an hour afterwards. We went to radiology to ensure the placement is correct and headed home.

At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.

Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!

Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.

Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)

The Holidays!

We've had such a relaxing and wonderful holiday that I haven't had the time to blog :-) Christmas morning was very emotional for me and my mom and dad got to laugh at me as I couldn't stop crying tears of joy/relief/pure happiness. Having Gesina home on that morning surrounded by family who loved her... was just too much awesomeness for me to contain! She was in an amazing mood as well. Gesina smiled, laughed, and enjoyed snuggles all day long. All the horrible Christmas's I've had in the past were erased by the awesome Christmas of 2014.

Gesina got a toy rattle that has really made a difference for her. Her $20 rattle is the first toy she will hold onto for a significant period of time. All other rattles or toys she would immediately drop after I put them in her hand. This rattle lights up with minimal stimulation and she continually tries to put the rattle in her mouth (she never did this before) and has also realized that she can rattle it on purpose! This toy provides more evidence that she is able to think and is understanding that she can impact her environment. She has a variety of other sound/light toys that I put near her and she can slap at. Sometimes she successfully hits the right buttons, etc. and I cheer her on. I'm never 100% certain she knows cause and effect but I cheer her on anyway as she'll figure it out on her own schedule. Her vision is either on or off, which is common with cortical visual impairment, and lately it has been off. This usually means she is experiencing a change in a different "system". I'm not sure what that system is (maybe cognitive?) but her vision is just not working lately.

I've taken her to a speech pathologist to work on her eating solids. It was a frustrating experience. I wanted to assess Gesina's ability to eat more textures. Unfortunately for me, that is not what happened. Instead I was introduced to the philosophy of the speech pathologist, which is to go slow with using a spoon so Gesina can learn to enjoy eating. Well, that's nice and all but (1) she's American, she will find a way to enjoy eating soon enough, (2) she vomits when she gets too much formula so less feeding by spoon is not really an option, and (3) she is really good with a spoon. Why would I use the spoon LESS when she's good with it? Sure, she may learn a "better" technique but in the process may learn to just eat less in general. So, screw it. The speech folks have a philosophy I don't buy into so I'm going rogue. I'll feed her the way I think is best which is more textures, flavors, variety and less formula. Just because she has a g-tube doesn't mean that formula is all I'm going to use to feed her. She needs more calories and experiences so I'll give her that... not more formula! She's 13 months for goodness sake, why would she need MORE formula. Blah.

Next up, every single doctor all over again :-( Seems that my price for getting the holidays off from doctors appointments are more doctors appointments in January. So we will soon get an audiology test to ensure that yes, she CAN hear (the mechanics are in working order), but DOES she hear. Then GI, Physiatrist, her g-tube button put in, Neurologist, NICU developmental clinic, etc. I'm supposed to follow up with the speech pathologist in 6 weeks but I'm thinking that is not a good use of our time right now. There is no magic pill or doctor who is going to make Gesina's life dramatically better so if there is no true contribution, you're off Team Gesina... until further notice. Maybe when Gesina starts talking we'll go back but until then, my speech therapist every other week is fine with me. 

Gesina's 1st Birthday!!

For her first birthday, I've created the modern version of a scrapbook, a video montage! It's been a long year and this whole journey started when I decided one day that I wanted a baby. So I had one, and she is perfect :-)

https://www.youtube.com/watch?v=Um5qG6SP6NQ&t=2s

I'll post pics from her and my "Survivor" themed birthday party soon :-)

Laughs, giggles, and reflecting on year 1

So the good news is after 11 months, Gesina laughed and giggled! And I got it on tape!

She is a daddy's girl and finds him to be the coolest person she knows. She also smiles at new voices. I'm not taking it personal that when I talk, she cries louder or when I pick her up, she fusses. I know I'm the one giving her meds and trying to get her to eat so I'll take the "hit" for now but I will turn her into a momma's girl eventually!

In an effort to add more fun to life, we went shopping. Dr. Aunt Amy decided to jazz up Gesina's look and she wears it well...

So things for Gesina are going well. She is having more good days than bad lately and you'd think I'd be ecstatic. But as it gets colder, the memories of the NICU are sneaking up on me. Seeing Gesina ready for her g-tube surgery, with all the needles and tubes, I had a moment where the NICU emotions washed over me like a tsunami. Of course, that was quickly put into perspective with the "she's going to die soon" crap. But I anticipate these emotions are going to come and go as we move into the winter months.

As we get closer to Gesina's birthday, I've been reflecting on all that we have survived in the last year. What we've gone through is truly mind boggling. Just when you think it can't get worse, another doctor tells you your baby's going to die. I now look at all the products marketed to new moms and their babies, with their constantly present disclaimers that "if left unattended, your baby could die" messages that used to terrify me, and I get mad. No mother should be made to live with the constant fear that something horrifying is going to happen to their baby. Cut new moms some slack. I was just reading recently that if I put a jacket on Gesina in her car seat, I could INTERNALLY DECAPITATE her. Seriously? That's the messages you bombard new moms with? Let the mom's with medically complex kids worry about their babies dying, because it might happen to us. Leave the mom's with babies born healthy alone to enjoy motherhood. It takes some serious soul searching and gumption to survive being continually told that bad things will happen to your child and that milestones may never be reached. To pull yourself out the depths of despair that you feel as you initially here these things, and come around to finding the silver lining every time is emotionally draining and exhausting. I'm sure at some point I'll smugly announce that this experience taught me "how strong I am" or "how to be a good mom" but I'd rather have not been tested this way. I'd rather not have to live with the knowledge that my beautiful, perfect baby girl may leave me early. No matter how much I love her, protect her, and provide her with the best care available. That this is NOT a just world, where only good things happen to good people; that I can't WILL her to good health. So those mothers out there with perfectly healthy babies, kiss them, enjoy those milestones and do NOT obsess about all those negative messages trying to scare you. As for me, I will continue to reflect on how we survived the last year and be a bit melancholy until December 4th. But come December 5th, we will begin Gesina's next year of life with a fierce focus on not just surviving our lot in life, but THRIVING. More adventure, more experiences, and more giggles. I can't keep waiting for things to "settle down" before we embrace all that life has to offer us, because settling down may never happen. Instead, we are going to thrive. We won't put off for tomorrow the fun we could have today. Gesina and I will run a 5K together, even IF I have to push her along in a jogging stroller (and a blanket over her face because she hates the wind :-)). Year 2 is going to be awesome and I can hardly wait.

Hope Floats

My neurologist, Dr. Shah called and we now have a little hope. Essentially, it all comes down to a judgement call. Clinically, Gesina fits the description of Ohtahara Syndrome (OS). So if you were to describe her seizure experiences, the timeline of her seizures, and the difficulty in controlling them with meds so far, she fits OS. However, if you look at her EEGs, she does not fit. She has not shown the suppression-bursts described with OS when you read her EEGs. Thus, some neurologists would conclude that she has OS, however Dr. Shah is not one of them. To make such a damning (my word) diagnosis, Gesina would have to be textbook OS for Dr. Shah to call it. Why? Because the label does not help her and it carries the weight of a miserable prognosis. It doesn't change her treatment plan of seeking the best meds to control her seizures as stopping the seizures is paramount to protecting her from further brain damage. Thankfully, she does not seem to be having seizures that we can't see clinically, meaning she isn't just seizing all the time.

So, what now? A few weeks ago we tried a new drug with the possible side effect of a "deadly rash"... well my sensitive little monkey started getting a rash so we had to stop that immediately. We have her started on a new drug now that is supposed to help "normalize" the EEG according to what I've read. The Children's hospital added another so she is on 4 seizure meds at the moment... we are weening her off one of them but it looks like we are super serious about getting these seizures in check. At this time, we can't say she doesn't have OS but we are not convinced she does. I'm okay with that because it really does give me some hope... maybe she won't die in a year?

As for the g-tube... get a g-tube they said, it'll make your life easier, they said... after 4 days of constant irritation, crying, vomit, and tylenol I went back the GI doc this morning. They've determined her pain isn't g-tube related (for medically complex kids, I think the "not my problem/domain" response is common). The gj-tube was suggested but thankfully she has finally stopped crying and I'm more slowly introducing food through the tube. I'm physically and emotionally exhausted at this point. But unlike everyone else I know, I haven't been as sad. The reason why? I get to look at this beautiful face everyday and she thinks that today is no different than last week... and that's the way I like it!

 

When the worst-case scenario becomes reality

I'll start this post by saying, we will be seeking a "second" opinion from my usual Neurologist. With that said, we went into Children's of Wisconsin for a g-tube and came home with a few years to live.

We went to get Gesina's g-tube and thankfully, that went well. However, in our hospital room a few hours later Gesina started having weird episodes that she had actually started having the day before. The episodes the day before surgery were odd enough that I had gotten video and was going to keep an eye on it. Knowing Gesina had been slightly under medicated for her seizures (weaning off one med, ramping up another) I planned to keep an eye on it. Well, in her recovery room she had the episodes but more severe and more often. She would startle with her arms, take in a loud quick breath, then cry like she was terrified. This would happen quite a few times over the next few hours. We were quickly transferred to neurology for another video EEG. They came back with the news that it's not infantile spasms, which I was happy about, until they told me what they do think she has... which is worse than infantile spasms.

The neurologist at CHW believes Gesina has Ohtahara Syndrome, which is very rare and characterized by progressively worsening, difficult to control seizures with profound and severe mental and physical disability. It is my understanding that those with this syndrome usually die at about 2 years of age. With luck controlling the seizures and loving care, she may live to approach the double digits in age but she will not develop much more than she has.

I'm in such a state of shock that while I had an initial wave of emotion at the hospital after the doctors left, I'm now just functioning on autopilot. I've accepted that I'm just going to cry whenever the emotions hit me. On a cognitive level, I know that this changes everything. My whole plan or play book on what it will be like to be Gesina's mom is going to be thrown out the window. Tummy time? "F" that. Worrying about whether or not her legs are perfectly straight for when, 30 years from now, they figure out how to "fix" CP issues with gene therapy? Not my concern. Worrying about Gesina depending too much on the g-tube and that she will have it "forever", who cares. If she hates eating, we use the g-tube. We live for today because we are not promised tomorrow. Spending holidays at the hospital because "she won't remember her first Halloween anyway" doesn't cut it anymore. We are living every moment up to the best of our ability. I don't get to be a mom for very long, so I have to fit as much joy and love into these days as I can. Gesina doesn't get to live long, so she will experience love, joy, beauty, and all that our life has to offer her. She will not spend every waking moment "trying" to regain "normal" abilities. That isn't in the cards so we are not going to force it. We will spend every waking moment enjoying what we have. So every one one note, come December 5th, we will be having the best, most ridiculous tiara-wearing birthday party I can manage in my mental state. We will celebrate me being 40 (on December 3rd) and Gesina being 1 and not because we are sad or in mourning, but because I made it to 40 and she made it to 1. This is really no small feat. I promise you I will cry, which is why I need to have as many friends there as I can. I don't ask for help, but I need it now. I need help keeping my spirits up as I focus on the joy of life while I have Gesina. I'll also need help in the years to come and when I lose Gesina. I'm not sure I'll recover from this but because I'm no longer concerned about the future, I'll not worry about that until it happens.

Send positive thoughts our way as I try to go through the steps of mourning as quickly as possible because my little Gesina monster deserves better. I'll let you all know what my regular neurologist says and you never know, maybe this will just be one of those times a doctor freaked out for no reason. But I'm not going to be counting on that. It doesn't hurt to live each day like it's your last anyway.