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.
Monday, January 12, 2015
Friday, December 5, 2014
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 :-)
https://www.youtube.com/watch?v=Um5qG6SP6NQ&t=2s
I'll post pics from her and my "Survivor" themed birthday party soon :-)
Tuesday, November 18, 2014
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.
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.
Tuesday, November 4, 2014
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!
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!
Saturday, November 1, 2014
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.
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.
Thursday, October 16, 2014
Labels and services
We now have a Physiatrist that I like who seems like a doctor that will help coordinate Gesina's treatments and therapies instead of me feeling I have to coordinate it all. The good news is she is proactive on getting Gesina going with cerebral palsy treatments. We have added baclofen to the medications list (a muscle relaxer) and next week Gesina gets fitted for AFOs for both feet. An AFO is an ankle-foot orthosis, which is a plastic boot fitted specifically to Gesina's feet. The AFO will encourage her feet to grow in appropriately and not let her muscle tightness cause her feet to turn inward or anything that will further complicate her potential for movement. It was so nice to talk to an expert on CP because she filled in so many missing pieces on why Gesina responds to the world in the way she does. I feel that we finally have the doctors we need to fill the team for a little while. The bad news is Gesina finally got the diagnosis/label I've dreaded for a long time. She was diagnosed with "congenital quadriplegia". It's the worse type of CP linked with the worst outcomes, at least statistically. I know every child is different and the severity of her CP hasn't been written down yet but I can't help but have a reaction to that label. I'll come around but it just hurts the soul a bit.
In other news, Gesina has been accepted into the Medicaid program in Wisconsin! Yay to secondary insurance AND it is back dated to April 1, 2014 meaning her April hospital stay and beyond will be covered. Oh and I can now switch from early intervention PT and OT to private therapy that uses a medical model of therapy. This is great because the medical model will allow for more therapy per week AND won't consist of just telling me to work on things with Gesina. I still find that I don't have the time to do all they want me to do and I can't handle the pressure of it. Now the stress can be relieved a bit as now I have therapists for that and some of the stress is off of me. Whew. I did learn that only kids who would be institutionalized if their parents didn't take care of them get approved for the Katie Beckett waiver for medicaid. This is to encourage the families to care for their special needs children and is cheaper than institutionalizing these kids. This has scared the bajeebies out of me. My child is so severely disabled that she would be institutionalized? What happens if I die? So I'm frantically creating a "taking care of Gesina" document, looking into writing a will, and getting some life insurance ASAP. Either way, we are inching towards her first birthday and she's here. I'll keep getting her the doctors, services, and medical devices she needs but with less stress from her OT/PT stuff, I'm going to just focus on being her mom, loving her, and having more fun with her. On that note, here she is trying on daddy's glasses :-)
In other news, Gesina has been accepted into the Medicaid program in Wisconsin! Yay to secondary insurance AND it is back dated to April 1, 2014 meaning her April hospital stay and beyond will be covered. Oh and I can now switch from early intervention PT and OT to private therapy that uses a medical model of therapy. This is great because the medical model will allow for more therapy per week AND won't consist of just telling me to work on things with Gesina. I still find that I don't have the time to do all they want me to do and I can't handle the pressure of it. Now the stress can be relieved a bit as now I have therapists for that and some of the stress is off of me. Whew. I did learn that only kids who would be institutionalized if their parents didn't take care of them get approved for the Katie Beckett waiver for medicaid. This is to encourage the families to care for their special needs children and is cheaper than institutionalizing these kids. This has scared the bajeebies out of me. My child is so severely disabled that she would be institutionalized? What happens if I die? So I'm frantically creating a "taking care of Gesina" document, looking into writing a will, and getting some life insurance ASAP. Either way, we are inching towards her first birthday and she's here. I'll keep getting her the doctors, services, and medical devices she needs but with less stress from her OT/PT stuff, I'm going to just focus on being her mom, loving her, and having more fun with her. On that note, here she is trying on daddy's glasses :-)
Monday, October 6, 2014
10 months and 1 day
Gesina is 10 months and one day old today. She's had a string of good days (with smiles) and I don't want to jinx it, but I think the stomach bug is over! She is a healthy 16 pounds 12 ounces, feels "sturdy" lately with more head control, and is finally TOLERATING TUMMY TIME!!! Yay! It only took 10 months for this and when I say tolerating, I mean some days she'll stay on her tummy for an hour and others 5 minutes. But she is consistently allowing it to happen... lately. She even smiled in reaction to MY voice this morning and not just Adrian's voice or her iPad. The little monster is turning into a daddy's girl but given time, she'll realize her momma's pretty neat too!
The good news is that Gesina does NOT have infantile spasms :-) We are so happy to hear that! The EEG was abnormal showing spikes and at times, rhythmic spikes that are like a precursor to a seizure. But during the whole 72 hours, she did not have a seizure. The neurologist is changing her meds because our goal has always been to prevent seizures, not just treat them when they occur. Her new med is Lamictal and it takes 8 weeks to get her ramped up to the right dose. One side effect we have to watch for is a deadly rash... no big deal, just a deadly rash!!! But if there is one doctor on Team Gesina that I trust implicitly, it's her neurologist. He saved her life when she was born so he's used to these life and death decisions and since he was right last time...
Last week I got a second opinion on the g-tube from a new GI doctor that works out of an office close to my home a few days a week. She also works in the same Milwaukee office as the current GI but comes recommended by Gesina's therapists. She was much better about my concerns and reassured me that Gesina needs the g-tube to ensure her limited energy is spent on developing and not on eating. Honestly, I'm still not convinced she needs it as she has chubby cheeks now and is doing so well with food. BUT, if there is any chance, no matter how small, that getting a g-tube will help her advance her development in this small 3-year window when her brain is its most plastic, then I have to try. She is a slow eater (like her momma, grandma, and great-grandma) so that does take energy. Also, I've read that kids with CP need more calories because they burn so much energy with the constantly tight muscles. Those things added together, I figure I'll get the g-tube and may or may not need it. But at least I can say I've done everything I can to help her develop as best she can. Blah. But that happens, with an overnight hospital stay (and a couch for momma), at the end of the month. Oh, and in a way I get the best of both worlds. The previous GI doc is doing the surgery because he is the first pediatric gastroenterologist in eastern Wisconsin and taught everyone in his office how to do this surgery. So I figure, he's the best. But after the surgery I'm switching to the new GI doctor who works in the same practice but has a better "bedside manner." My relationship with the GI doctor and his/her nutritionist is long term and vital so I have to be able to work with them comfortably. I have a pretty stringent selection system for Team Gesina and seem to be going through doctors relatively quickly ;-)
Next up, we meet the only Physiatrist that works in my town a few days a week. She comes recommended by my therapist (who has 10 kids and a few have CP) but our first appointment is in Milwaukee. I'm hoping this will be it for doctors needed for Team Gesina for a while. I'm looking forward to a break from doctors visits and switching out doctors/therapists! I just hope all these med changes and surgery don't mess up Gesina's streak of good moods and tummy time.
The good news is that Gesina does NOT have infantile spasms :-) We are so happy to hear that! The EEG was abnormal showing spikes and at times, rhythmic spikes that are like a precursor to a seizure. But during the whole 72 hours, she did not have a seizure. The neurologist is changing her meds because our goal has always been to prevent seizures, not just treat them when they occur. Her new med is Lamictal and it takes 8 weeks to get her ramped up to the right dose. One side effect we have to watch for is a deadly rash... no big deal, just a deadly rash!!! But if there is one doctor on Team Gesina that I trust implicitly, it's her neurologist. He saved her life when she was born so he's used to these life and death decisions and since he was right last time...
Last week I got a second opinion on the g-tube from a new GI doctor that works out of an office close to my home a few days a week. She also works in the same Milwaukee office as the current GI but comes recommended by Gesina's therapists. She was much better about my concerns and reassured me that Gesina needs the g-tube to ensure her limited energy is spent on developing and not on eating. Honestly, I'm still not convinced she needs it as she has chubby cheeks now and is doing so well with food. BUT, if there is any chance, no matter how small, that getting a g-tube will help her advance her development in this small 3-year window when her brain is its most plastic, then I have to try. She is a slow eater (like her momma, grandma, and great-grandma) so that does take energy. Also, I've read that kids with CP need more calories because they burn so much energy with the constantly tight muscles. Those things added together, I figure I'll get the g-tube and may or may not need it. But at least I can say I've done everything I can to help her develop as best she can. Blah. But that happens, with an overnight hospital stay (and a couch for momma), at the end of the month. Oh, and in a way I get the best of both worlds. The previous GI doc is doing the surgery because he is the first pediatric gastroenterologist in eastern Wisconsin and taught everyone in his office how to do this surgery. So I figure, he's the best. But after the surgery I'm switching to the new GI doctor who works in the same practice but has a better "bedside manner." My relationship with the GI doctor and his/her nutritionist is long term and vital so I have to be able to work with them comfortably. I have a pretty stringent selection system for Team Gesina and seem to be going through doctors relatively quickly ;-)
Next up, we meet the only Physiatrist that works in my town a few days a week. She comes recommended by my therapist (who has 10 kids and a few have CP) but our first appointment is in Milwaukee. I'm hoping this will be it for doctors needed for Team Gesina for a while. I'm looking forward to a break from doctors visits and switching out doctors/therapists! I just hope all these med changes and surgery don't mess up Gesina's streak of good moods and tummy time.
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