I took Lexi to Cleveland Clinic yesterday- it was my first time taking her to Cleveland by myself (I've done Columbus a few times). The wonderful thing about it is it means Lexi is making BIG improvements- no feedings required throughout the day AND she can play fairly well in the waiting rooms! I have to admit we were BOTH exhausted by the time we go home, but we did manage quite well!
Lexi saw GI and she is a WHOPPING 32lbs!! It may seem small for almost 4, but our goal was 30 pounds! She went above and beyond that! We have been having SIGNIFICANT issues with Lexi's night time feeds. She pulls on her feeding tube, which makes the pump beep, which means mommy or daddy come running, which means Lexi gets some interaction! (She's a smart little girl!!). She is also still in a crib and she is really getting too big (at 3ft, 3 inches) to be in a baby crib, but we simply aren't able to keep her hooked up to a feeding pump and allow her free roam- her tube would be pulled out every night I'm sure! Two nights ago, her pump was beeping at 3am (which is common for the pump to beep multiple times as it gets pulled and twisted)... but this time it was wrapped around her neck.....TWICE! So, long story short... since Lexi has gained some weight, the GI Doctor was comfortable allowing us to take her off her night time feeds!! WOOHOO! We will need to get 24 oz of pediasure in her either via drinking it or a few bolace feeds (dumping a small amount of formula into her feeding tube all at once) during the day. BUT, we'll take it! Our hope is that within the next few months, we can do away with ANY feeds!! THAT would be a pure miracle considering we were told she may never walk or talk- let alone be OFF a feeding tube (but we won't get our hopes up quite yet!). For now, we are just thrilled to not have to spend 15 minutes at bed time prepping her night time feeds!!
We also neurology and they are thrilled with her progress and the fact that she has only had 1 seizure since starting her medication. The doctors would like to coordinate a day of testing for Lexi within the next month or so- the neurologist is concerned that Lexi may have more than just cranial nerve damage- he is concerned other nerves in her body were affected by her surgery (hence her incredible instability!). So, they plan to do a full body nerve conduction study (EMG), a cardio MRI and remove her adenoids and tonsils to help with her sleep apnea. This will take quite a bit of planning as she will need to be transported to 3 different departments of Cleveland Clinic while under sedation. The ENT, Neurology and Cardiology departments will coordinate and schedule it all for us (YES- I LOVE Cleveland Clinic!).
We know Lexi is extremely delayed and anything but a "typical" 3 1/2 year old. BUT, for us, what is important is that she is making PROGRESS! She is moving forward daily and we are amazed at the things she is able to do. I dropped her off at Blanchard Valley School on Thursday and she said "This is so much fun!" (which is what I tell her every time I drop her off because she usually cries). She is a joy to be around and we are learning to take EVERY milestone (big and small)!
On a side note: I (Cherie- Lexi's mom) was finally approved with our insurance company to see a brain tumor specialists at the Taussig Brain Tumor Center at Cleveland Clinic, which is another huge blessing! (If you missed it- I was diagnosed with a small brain tumor between my carotid artery and my optic nerve in May). I'm working on finding the right specialists there and setting up an appointment for the initial consult, followed by Cleveland Clinic running their own testing. And yes- keeping up with both me and Lexi's medical expenses and appointments is definitely becoming more a full-time job than it was before! :-)
Please pray for:
Upcoming appointments for Lexi on October 8th with ENT and cardiology to work out all the testing.
For Lexi to gain tons and tons of weight so we can move her completely off a feeding tube and only to pureed foods
For the process of my brain tumor- pray that I am led to the right doctor!
Thanks again for your prayers- we are thrilled with Lexi's progress!
Saturday, September 8, 2012
Wednesday, June 20, 2012
Yet another diagnosis
I just returned from a 10-day tour with the high school singing group I direct, but wanted to be sure to update everyone about Lexi's progress.
We took Lexi to Cleveland Clinic on June 7th for a brain and spine MRI and an EEG. The EEG done at our local hospital was not done properly and 80% of the test was not even readable (but, of course, we had to pay for it!). Lexi was a trooper! She had to sit still with 36 wires attached to her for over an hour and then be taken immediately down to MRI and be sedated and placed on a vent to help her breathe. I never cease to be amazed at how tolerating she is of all of it and it reminds me to stop sweating the small stuff!
We walked in the door from Cleveland Clinic about 6:30pm and the phone rang.... it was Lexi's neurologist....that's never a good sign. The good news: Her MRI has not changed- the chiari malformation is still at 6mm which is a praise! However, her EEG showed some disturbing readings. The neurologist is pretty certain Lexi has epilepsy. He said the type she has (I can't remember the name of it after the last few weeks I've had) is fairly common in older children and they tend to outgrow it by their mid-teens. However, Dr. Frieman (the neurologist) said it is extremely rare to see this type of epilepsy in a child so young (Of course it is! Lexi can never be simple!!). He wanted to do bloodwork immediately and put her on a strong medication for this condition, but also gave us the option of additional and more extensive testing, which is what we are choosing to do. We would like to be certain this is what is happening with Lexi before we put her on such a strong medication that she could quite possibly be on for the rest of her life.
So, we will be going to Cleveland Clinic July 6,7,8 and possibly 9th for 72 hours of constant EEG/EKG and video monitoring in the pediatric epilepsy unit. This is going to be a REALLY long 3-4 days with a mobile child hooked up to all sorts of wires! Fortunately, I will be able to stay with Lexi and Jon and the twins are going to try to get a room at the Ronald McDonald house.
Many prayers would be appreciated. We are very saddened by this new diagnosis- our poor sweet baby has soo much on her plate already and we feel like every few months, a new condition develops. It is simply exhausting to keep up with all of it on top of trying to sort through my own brain tumor. My neurosurgery appointment in town is June 26th and from there I will be seeing a pituitary tumor specialist at Cleveland Clinic (assuming our insurance will grant us in-network coverage!)
Please pray for:
My appointment on the 26th for my pituitary tumor. The local neurosurgeon has taken a position with Cleveland Clinic (believe it or not) so if I need surgery, he will not be able to do it. I would like to see a specialist at Cleveland but they are out of network. We pay for it for Lexi because it is worth it. However, we cannot add additional out-of-network expenses for my medical issues! Pray that God will allow all the right people to come in to place so the insurance company will make an exception for Cleveland Clinic to be covered in-network for me.
Pray for our appointment with Lexi on July 6,7,8 and 9. Please pray for patience for me and Lexi and creativity as I try to keep her entertained for 72 hours hooked up to all her wires! Please also pray that the results are more favorable than her first EKG at Cleveland Clinic.
Thank you all! We will keep you posted!
We took Lexi to Cleveland Clinic on June 7th for a brain and spine MRI and an EEG. The EEG done at our local hospital was not done properly and 80% of the test was not even readable (but, of course, we had to pay for it!). Lexi was a trooper! She had to sit still with 36 wires attached to her for over an hour and then be taken immediately down to MRI and be sedated and placed on a vent to help her breathe. I never cease to be amazed at how tolerating she is of all of it and it reminds me to stop sweating the small stuff!
We walked in the door from Cleveland Clinic about 6:30pm and the phone rang.... it was Lexi's neurologist....that's never a good sign. The good news: Her MRI has not changed- the chiari malformation is still at 6mm which is a praise! However, her EEG showed some disturbing readings. The neurologist is pretty certain Lexi has epilepsy. He said the type she has (I can't remember the name of it after the last few weeks I've had) is fairly common in older children and they tend to outgrow it by their mid-teens. However, Dr. Frieman (the neurologist) said it is extremely rare to see this type of epilepsy in a child so young (Of course it is! Lexi can never be simple!!). He wanted to do bloodwork immediately and put her on a strong medication for this condition, but also gave us the option of additional and more extensive testing, which is what we are choosing to do. We would like to be certain this is what is happening with Lexi before we put her on such a strong medication that she could quite possibly be on for the rest of her life.
So, we will be going to Cleveland Clinic July 6,7,8 and possibly 9th for 72 hours of constant EEG/EKG and video monitoring in the pediatric epilepsy unit. This is going to be a REALLY long 3-4 days with a mobile child hooked up to all sorts of wires! Fortunately, I will be able to stay with Lexi and Jon and the twins are going to try to get a room at the Ronald McDonald house.
Many prayers would be appreciated. We are very saddened by this new diagnosis- our poor sweet baby has soo much on her plate already and we feel like every few months, a new condition develops. It is simply exhausting to keep up with all of it on top of trying to sort through my own brain tumor. My neurosurgery appointment in town is June 26th and from there I will be seeing a pituitary tumor specialist at Cleveland Clinic (assuming our insurance will grant us in-network coverage!)
Please pray for:
My appointment on the 26th for my pituitary tumor. The local neurosurgeon has taken a position with Cleveland Clinic (believe it or not) so if I need surgery, he will not be able to do it. I would like to see a specialist at Cleveland but they are out of network. We pay for it for Lexi because it is worth it. However, we cannot add additional out-of-network expenses for my medical issues! Pray that God will allow all the right people to come in to place so the insurance company will make an exception for Cleveland Clinic to be covered in-network for me.
Pray for our appointment with Lexi on July 6,7,8 and 9. Please pray for patience for me and Lexi and creativity as I try to keep her entertained for 72 hours hooked up to all her wires! Please also pray that the results are more favorable than her first EKG at Cleveland Clinic.
Thank you all! We will keep you posted!
Friday, May 18, 2012
A Turn of Events
I wanted to post for those of you that read-up on Lexi and our family. We have had a small turn of events over the past weekend:
Lexi woke up early (4am) on Mother's Day and sounded like she was choking, she then started gagging and vomiting. We spent about an hour with her and she finally fell back to sleep. Jon let me sleep in on Mother's Day (because he's wonderful) so he got Lexi up. When he went to get her up, he found her staring blankly at the wall, making gagging sounds and flapping her arms around. He said he had never seen her act this way before. He picked her up and she was completely stiff. So, he laid her on the floor until she "snapped out of it." He then took her downstairs and came up to get me (with a cinnamon roll and juice for Mother's Day) :-) By the time I got downstairs, Lexi was unable to move her left arm and was very lethargic. So, I got dressed and rushed her to the ER (Happy Mother's Day right?? She also was EXTREMELY ill and almost hospitalized on my birthday! Someone please give this child the memo that this is no way to treat Mommy!) :-)
At the ER, the doctors were very concerned about her lack of response. They did Xrays of her chest and abdomen and arm (they were worried she might have ingested something). They did blood work and a urinalysis. They did a CT scan (they were worried she had a stroke). They put in an IV because she was dehydrated. Lexi slept through ALL of that! The tests showed some elevated white blood cells and her electolytes were very off. But, after more questions and evaluations, they admitted her and did and EEG early (like 6:30am early!) the next morning.
We (Jon and I and the doctors) are pretty sure Lexi had a seizure. She exhibited a lot of signs including a numb limb and extremely lethargic. So, they called Lexi's neurologist at Cleveland Clinic and he double-booked himself to see her Friday (today). Her neurologist literally schedules 4-6 months out so we were blessed that he got us in! We personally took him a copy of Lexi's actual EEG read-out (thanks to our wonderful hospital peds who had the EEG techs get us a disc before we even left the hospital!!). The Cleveland Clinic neurologist is going to read the EEG and has scheduled and MRI for Lexi at the beginning of June (oh goody- MORE TESTS! And yes- I'm being saracastic). Dr. Friedman (the neurologist) said that because of "whatever happened to Lexi's brain during her heart surgery" she is at an increase risk for developing seizures and went over with us what to look for and what to do if she has one again (we are PRAYING she doesn't). We will wait and see what her MRI shows and what Dr. Friedman sees on her EEG before moving forward.
This is very discouraging us. Dr. Friedman told us that his seizure treatment program is a two-year process! Our poor sweet baby just can't catch a break! If Lexi goes 6 months without another "episode" and if the EEG and MRI show nothing of concern, we should be in the clear.... but that seems like a lot of "if"s to us. Please pray that this was a one-time event and we will not have to add more to our sweet little girls plate!
On another note- I (Cherie- Lexi's mom) was recently diagnosed with a microadenoma of the pituitary gland. Basically, I have a small tumor just above my pituitary gland on my brain. I have had 2 MRI/MRAs and was supposed to see a neurosurgeon today to discuss my options......until this all happened with Lexi. She most definitely comes first. So, my appointment was rescheduled for June 26th. I get debilitating headaches some days and the medication I'm on makes it very hard to focus. Please pray for some relief while I wait for my appointment and that I can be treated with medication and not surgery.
So, to some up the past month (when it rains it poors- but we believe that "blessings can come from raindrops" too!):
Please pray for proper diagnosis for Lexi in the next week:
1-Pray for her MRI- we wont know the exact date till next week because they will also do a heart MRI, MRA and remove her adnoids and tonsils while she is sedated for her brain MRI!! That involves 5 departments at Cleveland Clinic- Lexi is a rock star there!! :-)
2-Pray for my headaches and some relief from my tumor while I wait for my new appointment.
3-Pray for our budgeting skills. I have literally received over 30 bills this MONTH- please pray for patience and understanding from the multiple hospitals and doctors we are trying to work with between me and Lexi's bills and that I find time to manage it all- the medical bills alone are a part-time job!!
Despite all of this, we are so thrilled with Lexi's progress. When Jon came to get us from the hospital on Monday, she toddled down the hall and said, "Hi Daddy! I missed you!" For a little girl the doctors told us might never walk or be able to talk- We'll TAKE IT!!! :-)
Thank you all for your continued prayers- it really is what helps get us through these tougher times. The love and support of friends (and those we really don't even know that well!) is one of our greatest blessings!
Lexi woke up early (4am) on Mother's Day and sounded like she was choking, she then started gagging and vomiting. We spent about an hour with her and she finally fell back to sleep. Jon let me sleep in on Mother's Day (because he's wonderful) so he got Lexi up. When he went to get her up, he found her staring blankly at the wall, making gagging sounds and flapping her arms around. He said he had never seen her act this way before. He picked her up and she was completely stiff. So, he laid her on the floor until she "snapped out of it." He then took her downstairs and came up to get me (with a cinnamon roll and juice for Mother's Day) :-) By the time I got downstairs, Lexi was unable to move her left arm and was very lethargic. So, I got dressed and rushed her to the ER (Happy Mother's Day right?? She also was EXTREMELY ill and almost hospitalized on my birthday! Someone please give this child the memo that this is no way to treat Mommy!) :-)
At the ER, the doctors were very concerned about her lack of response. They did Xrays of her chest and abdomen and arm (they were worried she might have ingested something). They did blood work and a urinalysis. They did a CT scan (they were worried she had a stroke). They put in an IV because she was dehydrated. Lexi slept through ALL of that! The tests showed some elevated white blood cells and her electolytes were very off. But, after more questions and evaluations, they admitted her and did and EEG early (like 6:30am early!) the next morning.
We (Jon and I and the doctors) are pretty sure Lexi had a seizure. She exhibited a lot of signs including a numb limb and extremely lethargic. So, they called Lexi's neurologist at Cleveland Clinic and he double-booked himself to see her Friday (today). Her neurologist literally schedules 4-6 months out so we were blessed that he got us in! We personally took him a copy of Lexi's actual EEG read-out (thanks to our wonderful hospital peds who had the EEG techs get us a disc before we even left the hospital!!). The Cleveland Clinic neurologist is going to read the EEG and has scheduled and MRI for Lexi at the beginning of June (oh goody- MORE TESTS! And yes- I'm being saracastic). Dr. Friedman (the neurologist) said that because of "whatever happened to Lexi's brain during her heart surgery" she is at an increase risk for developing seizures and went over with us what to look for and what to do if she has one again (we are PRAYING she doesn't). We will wait and see what her MRI shows and what Dr. Friedman sees on her EEG before moving forward.
This is very discouraging us. Dr. Friedman told us that his seizure treatment program is a two-year process! Our poor sweet baby just can't catch a break! If Lexi goes 6 months without another "episode" and if the EEG and MRI show nothing of concern, we should be in the clear.... but that seems like a lot of "if"s to us. Please pray that this was a one-time event and we will not have to add more to our sweet little girls plate!
On another note- I (Cherie- Lexi's mom) was recently diagnosed with a microadenoma of the pituitary gland. Basically, I have a small tumor just above my pituitary gland on my brain. I have had 2 MRI/MRAs and was supposed to see a neurosurgeon today to discuss my options......until this all happened with Lexi. She most definitely comes first. So, my appointment was rescheduled for June 26th. I get debilitating headaches some days and the medication I'm on makes it very hard to focus. Please pray for some relief while I wait for my appointment and that I can be treated with medication and not surgery.
So, to some up the past month (when it rains it poors- but we believe that "blessings can come from raindrops" too!):
Please pray for proper diagnosis for Lexi in the next week:
1-Pray for her MRI- we wont know the exact date till next week because they will also do a heart MRI, MRA and remove her adnoids and tonsils while she is sedated for her brain MRI!! That involves 5 departments at Cleveland Clinic- Lexi is a rock star there!! :-)
2-Pray for my headaches and some relief from my tumor while I wait for my new appointment.
3-Pray for our budgeting skills. I have literally received over 30 bills this MONTH- please pray for patience and understanding from the multiple hospitals and doctors we are trying to work with between me and Lexi's bills and that I find time to manage it all- the medical bills alone are a part-time job!!
Despite all of this, we are so thrilled with Lexi's progress. When Jon came to get us from the hospital on Monday, she toddled down the hall and said, "Hi Daddy! I missed you!" For a little girl the doctors told us might never walk or be able to talk- We'll TAKE IT!!! :-)
Thank you all for your continued prayers- it really is what helps get us through these tougher times. The love and support of friends (and those we really don't even know that well!) is one of our greatest blessings!
Wednesday, February 22, 2012
February 22, 2012- Has it really been 4 months??
Boy does time fly! I was talking with a friend tonight that I don't talk to very often and she said, "I try to stay up on Lexi's blog." Blog.....blog....OH yes! Lexi has a blog! So sorry to all of you that read this to follow up on our sweet little girl. I have a new phone and am putting in it to update her blog at the beginning of every month. It's a great way to look back when things are so hectic too!
Lexi's update:
Right now, Lexi is actually really sick. She had been doing REALLY well since her last rotovirus stay in the hospital at the end of October. Lexi has bronchitis and an inner ear infection. Unfortunately, when she gets respiratory infections, her pulse-ox (which should be between 98-100) drops really low. Yesterday it was running around 85. She has been to the doctor and we are doing round-the-clock breathing treatments, antibiotics and lots of fluids in a hope to keep her OUT of the hospital! We are hoping she wakes up a new little girl tomorrow- she has a lot of people praying for her!
Other updates:
Lexi started at Blanchard Valley Pre-school the 2nd week of November. She only goes Tuesdays and Thursdays because that's all mommy can handle her being gone! Plus, with all her appointments, it's all I can do to get her there 2 days! We learned at our parent-teacher conference 2 weeks ago that she has missed almost as many days as she has gone, but I'm not sure the school understands that Lexi has development AND medical delays. She is slowly adjusting and has finally stopped screaming and clinging to me when I drop her off- Thank the Lord! It was hard to leave her!! I think pre-school will be good for her if we can keep her more healthy!
PT: Lexi is crawling up and down stairs now- not sure if that's good or not! She is still very wobbly when she walks and this is a big concern for her therapists. We are trying to get her a compression vest to give her more stability when she walks but, of course, insurance denied it. I'm working on some grants to try to get this AND a therapy swing covered for her.
OT: Lexi finally knows what a crayon is! She is starting to make a few scribbles on paper even! This is very exciting! She doesn't always get the point down, but we'll take it! She is also into the "Dump and fill" stage....unfortunately, she only DUMPS right now- we need to work on the "filling" part! Jon alphabetizes our DVDs and Lexi LOVES to pull EVERY DVD right off the shelf. It drives Jon absolutely crazy and I think it's hilarious!
Speech/Feeding: Lexi is making HUGE gains in speech. She is probably using at least 30 words completely on her own WITH purpose! Unfortunately, she's still not able to use any sounds that involve lip closure- "m, b,p,v,f, " are all trouble sounds for her and that's a lot of our language. But, she is assimilating other sounds consistently- she says "dady" for baby and "nana" for mama. I understand her pretty well but others really struggle with understanding her. This is definitely becoming a big area of concern for us.
Lexi is still on a feeding tube all night but times like this when she is refusing to eat, we are actually thankful she still has a tube! We are making a trip to the feeding clinic on March 9th and are hoping for some good news about weight gain. At the Dr today she was 28 pounds- such a tiny peanut for 3 1/2!! But, she's tall and thin- perhaps she'll be a model! :-)
Prayers:
Please pray that we are able to find a way to get her therapy swing and compression vest covered as we are simply out of any other sources to pay for it!
Pray for Lexi's speech. Her facial nerve damage comes into play significantly and it is frustrating for everyone involved- especially lexi when no one understands what she wants/needs
Pray for our upcoming trip March 9th to Cleveland. We are actually going to Cleveland Clinic twice in March, Columbus Children's once, hospital pediatrician once and follow-up with regular pediatrician. We'll be back to our 5-6 appts a week in March and I'm really not looking forward to it. Pray for strength, answers from Drs and patience for Lexi!
Thank you all for your continued support of us and Lexi in this marathon!!
Lexi's update:
Right now, Lexi is actually really sick. She had been doing REALLY well since her last rotovirus stay in the hospital at the end of October. Lexi has bronchitis and an inner ear infection. Unfortunately, when she gets respiratory infections, her pulse-ox (which should be between 98-100) drops really low. Yesterday it was running around 85. She has been to the doctor and we are doing round-the-clock breathing treatments, antibiotics and lots of fluids in a hope to keep her OUT of the hospital! We are hoping she wakes up a new little girl tomorrow- she has a lot of people praying for her!
Other updates:
Lexi started at Blanchard Valley Pre-school the 2nd week of November. She only goes Tuesdays and Thursdays because that's all mommy can handle her being gone! Plus, with all her appointments, it's all I can do to get her there 2 days! We learned at our parent-teacher conference 2 weeks ago that she has missed almost as many days as she has gone, but I'm not sure the school understands that Lexi has development AND medical delays. She is slowly adjusting and has finally stopped screaming and clinging to me when I drop her off- Thank the Lord! It was hard to leave her!! I think pre-school will be good for her if we can keep her more healthy!
PT: Lexi is crawling up and down stairs now- not sure if that's good or not! She is still very wobbly when she walks and this is a big concern for her therapists. We are trying to get her a compression vest to give her more stability when she walks but, of course, insurance denied it. I'm working on some grants to try to get this AND a therapy swing covered for her.
OT: Lexi finally knows what a crayon is! She is starting to make a few scribbles on paper even! This is very exciting! She doesn't always get the point down, but we'll take it! She is also into the "Dump and fill" stage....unfortunately, she only DUMPS right now- we need to work on the "filling" part! Jon alphabetizes our DVDs and Lexi LOVES to pull EVERY DVD right off the shelf. It drives Jon absolutely crazy and I think it's hilarious!
Speech/Feeding: Lexi is making HUGE gains in speech. She is probably using at least 30 words completely on her own WITH purpose! Unfortunately, she's still not able to use any sounds that involve lip closure- "m, b,p,v,f, " are all trouble sounds for her and that's a lot of our language. But, she is assimilating other sounds consistently- she says "dady" for baby and "nana" for mama. I understand her pretty well but others really struggle with understanding her. This is definitely becoming a big area of concern for us.
Lexi is still on a feeding tube all night but times like this when she is refusing to eat, we are actually thankful she still has a tube! We are making a trip to the feeding clinic on March 9th and are hoping for some good news about weight gain. At the Dr today she was 28 pounds- such a tiny peanut for 3 1/2!! But, she's tall and thin- perhaps she'll be a model! :-)
Prayers:
Please pray that we are able to find a way to get her therapy swing and compression vest covered as we are simply out of any other sources to pay for it!
Pray for Lexi's speech. Her facial nerve damage comes into play significantly and it is frustrating for everyone involved- especially lexi when no one understands what she wants/needs
Pray for our upcoming trip March 9th to Cleveland. We are actually going to Cleveland Clinic twice in March, Columbus Children's once, hospital pediatrician once and follow-up with regular pediatrician. We'll be back to our 5-6 appts a week in March and I'm really not looking forward to it. Pray for strength, answers from Drs and patience for Lexi!
Thank you all for your continued support of us and Lexi in this marathon!!
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