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!!
Wednesday, October 19, 2011
Our Local Celebrity
This is the story that was on the front page of the Blanchard Valley School newsletter with a big picture of Miss Lexi Mae! It makes us so thankful for how far she has come. Yes she is really behind for "typical" three year olds, but looking back at her "near death" experience, we realize how lucky we are JUST to have her with us!!
Lexi’s Story
When I learned that I was pregnant in early 2008 we knew we were going to have our hands full.
We already had twin girls - Aleah and Elizabeth - who were just 13-months old when Lexi Mae Hocanson was born on Oct. 28, 2008.
Three children in 13 months! The diaper expense alone was staggering.
Little did we know how full Lexi would make our lives!
Lexi was born without complications, but doctors told us they heard a heart murmur.
We went home after four days in the hospital. Lexi continued to eat well, grow, and was an excellent sleeper. At her two-week check-up, however, our family doctor still heard the heart murmur and thought it was best if we had it checked by a pediatric cardiologist.
Lexi had an echo-cardiogram, followed by a visit to the cardiologist in mid-November. From that point on, our lives have been a blur!
Lexi was diagnosed with a severe coarctation of the aorta. This condition causes the aorta to resemble an hour glass and the doctor could feel no pulses in her lower extremities.
We were admitted to the Neonatal Intensive Care Unit at Blanchard Valley Hospital and transported the next day to Nationwide Children’s Hospital in Columbus, where Lexi was scheduled for open-heart surgery. The doctors said they had done hundreds of these surgeries in 2008 alone, and we should be home in plenty of time for Thanksgiving.
Unfortunately, Lexi’s surgery did not go according to plan. Lexi had a leak in her ventilator during surgery and suffered “near death” experience that required a blood transfusion. After surgery, Lexi was moved to the cardiac intensive care unit where she spent six days in a medically induced coma. She suffered a small stroke and seizures during these few critical days.
When Lexi finally awoke up, I was so excited to hold her and finally be able to feed her a bottle again. But Lexi wanted nothing to do with the bottle. After being awake a short time, I also noticed she was not blinking, and her face seemed almost paralyzed.
We spent the next six weeks at the hospital on the cardiac floor trying to figure out exactly what was happening with Lexi and her unique symptoms. Her heart repair looked good, but she was unable to eat, blink, move most of her face and had lost her gag reflex. After these exhausting few weeks with very few answers, we decided to have her put on a feeding tube, and we were able to fight our way out of the hospital in time to make it home by 11 p.m. on Christmas Eve.
After the holidays, we transferred Lexi’s care to the Cleveland Clinic. At the Clinic, Lexi was diagnosed with cranial nerve neuropathies, an additional heart condition - a supravalvular aortic stenosis - and severe bi-lateral facial nerve damage. Lexi somehow suffered damage to the core of her brainstem, where the cranial nerves are located, causing symptoms that are unique and very hard to treat.
In the past three years, we have learned a great deal. Lexi is almost three, but is developmentally at about 18 months. I quit my teaching position to stay home and run Lexi to therapies and doctors appointments and I have loved every minute of being home with her and the twins!
We currently make three or four trips a month to the Cleveland Clinic, see a Help Me Grow therapist once a week at our home, and visit Blanchard Valley Hospital twice a week for therapy.
Lexi has since been diagnosed with 16 different conditions, so she is definitely a full-time job.
Lexi has taught us that we, as her parents, are her only advocate. We must stand up for her and what we feel is right for her treatment. We also have learned to look at the small blessings in life and celebrate each developmental milestone.
I have thrown away my “milestone” books that I used for my “typical” twins. Lexi’s does what she can when she’s ready! We have to go on her time frame and use an extreme amount of patience. She is currently learning to walk, putting everything in her mouth and throwing fits when she doesn’t get what she wants! We didn’t have the Terrible Twos, but we’re having the Terrible Threes!
We also have come to realize how blessed we are. First, we are surrounded by a loving and supportive community. From our church family, who threw a benefit for 800 people to raise money for Lexi’s medical expenses, to a family that steps up to watch the twins whenever necessary so we can run Lexi to upwards of 25 appointments a month. We could never have made it through the past three years without their love and support.
We also know how blessed we are to have Lexi with us. She has been a fighter from day one and has faced more procedures and surgeries than any adult I know.
She teaches us strength, endurance and unconditional love. It is definitely not easy to raise a child with special needs, but we know we are surrounded by wonderful therapists, some of the best doctors in the world and the most supportive community anyone could ask for. I think the phrase “it takes a village to raise a child” holds true even in today’s society, and we are so blessed for the “village” in which Lexi has been placed!
October 19-Cleveland CLinic tests- 1 for 2....we'll take it
We went to Cleveland Clinic yesterday for a swallow study, echocardiogram, EKG and appointment with the cardiologist. Lexi's Echo, EKG and cardiology appointment went really well! Both of her narrowings are still "moderate" and "acceptable." So, the cardiologist does not want to see her back for 9 months! Lexi also had a major growth spurt since her last appointment so it is really encouraging that her narrowings have grown with her so well!
Unfortunately, Lexi did not pass her swallow study.....again. This is the 7th one she has failed. I was pretty certain she would pass, but she aspirated two times in 22 swallows. She IS making improvements however. The Speech Pathologist is going to allow us to give Lexi regular water between meals to start practicing with thin liquids and we'll will try again with another study in 6 months.
Finally, we have decided to go ahead and try Lexi at Blanchard Valley Preschool starting November 1st. It is crazy to think that our baby is going to preschool and I am having a REALLY tough time with it! But. with all of Lexi's appointments and therapies (she has TWELVE this week!), we are going to just put her in preschool two days a week. We are VERY concerned about her safety so please pray that things go well! Lexi grabs food and other objects very quickly and puts them in her mouth and then usually pukes, she tends to fall a lot as she is learning to walk, and we are concerned about her getting other children's drinks and aspirating. We are meeting with all the Blanchard Valley Therapists tomorrow to discuss our concerns and come up with a game plan. I'm thankful they are being so understanding and accommodating!
Lexi is making HUGE progress in speech and she is saying something new almost every day. She is so much fun and we are having a blast enjoying her upswing in progress! Thank you again for your interest and prayers for her! I am going to post a story that was written for the Blanchard Valley School News letter in the next post. It helps remind us of how far Lexi has really come. She turns three on next Friday, October 28th and we are so thankful for another wonderful year with our little miracle!
Unfortunately, Lexi did not pass her swallow study.....again. This is the 7th one she has failed. I was pretty certain she would pass, but she aspirated two times in 22 swallows. She IS making improvements however. The Speech Pathologist is going to allow us to give Lexi regular water between meals to start practicing with thin liquids and we'll will try again with another study in 6 months.
Finally, we have decided to go ahead and try Lexi at Blanchard Valley Preschool starting November 1st. It is crazy to think that our baby is going to preschool and I am having a REALLY tough time with it! But. with all of Lexi's appointments and therapies (she has TWELVE this week!), we are going to just put her in preschool two days a week. We are VERY concerned about her safety so please pray that things go well! Lexi grabs food and other objects very quickly and puts them in her mouth and then usually pukes, she tends to fall a lot as she is learning to walk, and we are concerned about her getting other children's drinks and aspirating. We are meeting with all the Blanchard Valley Therapists tomorrow to discuss our concerns and come up with a game plan. I'm thankful they are being so understanding and accommodating!
Lexi is making HUGE progress in speech and she is saying something new almost every day. She is so much fun and we are having a blast enjoying her upswing in progress! Thank you again for your interest and prayers for her! I am going to post a story that was written for the Blanchard Valley School News letter in the next post. It helps remind us of how far Lexi has really come. She turns three on next Friday, October 28th and we are so thankful for another wonderful year with our little miracle!
Sunday, October 2, 2011
Our Little Piggy Bank- October 2
It's hard to believe it's been 2 months since I last posted about Lexi Mae! The twins started pre-school a few weeks ago and I was convinced that THIS would be the thing I needed to allow my life to slow down a bit....or not (sigh). Here's the latest updates on Lexi!
Why the post "Our Little Piggy Bank?" If you haven't heard, a few weeks ago, Lexi started vomiting and eventual started to refuse to eat all together. After about a week of this, we got very worried. Unfortunately, when you have a child with multiple medical issues, you don't know exactly which doctor to turn to first! We called her GI doctor who said to talk to the feeding clinic, the feeding clinic said to talk to ENT and ENT said to talk to Neurology. FRUSTRATION! Finally, our neurologist at Cleveland Clinic, Dr. Friedman, took note! We are so thankful for him! He admitted Lexi to Cleveland Clinic because he was concerned that her chiari was having issues. After a whirlwind of being admitted, getting IVs started and a plethora of questions, one of the doctors said it sounded like she has swallowed something. So, off to X-ray we went (at 3am!!). Sure enough- a round, metal object lodged in Lexi's esophagus! So, first thing the next morning, the GI team came up to access her. Their main concern was that the object was next to her aorta and if it would tear through the esophagus, this would become a very serious situation. So, they scheduled Lexi for emergency surgery to remove the object. We were amazed at how quickly they moved! Within 20 minutes of talking to the GI doctor and signing all the forms, Lexi was down in pre-op! Turns out she swallowed a nickel. And yes, that actually gave us our money back :-)
However, last week, Lexi started having some similar symptoms so we took her to our local ER. Believe it or not, she swallowed another coin!! This one, however, is in her intestines and the doctors can't reach it. So, we are hoping she'll pass it on her own- otherwise (Dare I say it??)- it's back to Cleveland Clinic for more surgery! The doctors said we should find the little diaper surprise within a day or so....that was 5 days ago so a phone call will be made to Cleveland Clinic GI tomorrow.
In other news:
Feeding Clinic- after Lexi's last episode of nickel eating, she is down 9 ounces...not good! The clinic is hoping she will re-gain the weight so we don't have to put her back on more tube feeds during the day. They are also having us do some oral stretches on Lexi's mouth and cheeks to try to encourage nerve reintervation in her face.
ENT- Lexi is scheduled for a swallow study on October 18th. We are praying that she can be given the "all clear" to try thin liquids without aspirating!
Allergy- the best news is that Lexi passed a 4 1/2 hour food challenge for egg. She no longer has ANY food allergies which is a huge blessing! We're hoping being able to add egg into her diet will help with weight gain!
Development- Lexi has become a little parrot. She sings ALL the time and knows ALL the words to songs. You can't always understand her since she can't say "M," "B" or "P" due to her facial nerve damage but she is so cute! She mimics everything we say! She is not using a lot of words on her own, but we are really focusing on comprehension with her. She is continuing to work on walking with new foot braces and is becoming stronger every month.
Please pray:
That this nickel passes through Lexi's system without any more surgery needed! This little one has been through enough!
Lexi has a big transition meeting on October 19th. At this meeting, we focus on transitioning her out of Help Me Grow and into the school system (which seems crazy to me!). We are struggling with what to do with Lexi. We can move her to Blanchard Valley Preschool or we can keep her home and have a preschool teacher come to our house 1 hour a week. This is a big decision and we don't know which direction to go with Lexi. I'm just not sure I"m ready to send my little princess off to preschool quite yet! Please pray we make the best decision for Lexi!
Finally, pray for Lexi's upcoming swallow study on October 18th. Lexi has had 7 swallow studies in the past 2 1/2 years and has yet to "pass" one. This would be a HUGE blessing for her to pass the test!
As always, thank you for your prayers. We'll be posting some new pictures soon!
Why the post "Our Little Piggy Bank?" If you haven't heard, a few weeks ago, Lexi started vomiting and eventual started to refuse to eat all together. After about a week of this, we got very worried. Unfortunately, when you have a child with multiple medical issues, you don't know exactly which doctor to turn to first! We called her GI doctor who said to talk to the feeding clinic, the feeding clinic said to talk to ENT and ENT said to talk to Neurology. FRUSTRATION! Finally, our neurologist at Cleveland Clinic, Dr. Friedman, took note! We are so thankful for him! He admitted Lexi to Cleveland Clinic because he was concerned that her chiari was having issues. After a whirlwind of being admitted, getting IVs started and a plethora of questions, one of the doctors said it sounded like she has swallowed something. So, off to X-ray we went (at 3am!!). Sure enough- a round, metal object lodged in Lexi's esophagus! So, first thing the next morning, the GI team came up to access her. Their main concern was that the object was next to her aorta and if it would tear through the esophagus, this would become a very serious situation. So, they scheduled Lexi for emergency surgery to remove the object. We were amazed at how quickly they moved! Within 20 minutes of talking to the GI doctor and signing all the forms, Lexi was down in pre-op! Turns out she swallowed a nickel. And yes, that actually gave us our money back :-)
However, last week, Lexi started having some similar symptoms so we took her to our local ER. Believe it or not, she swallowed another coin!! This one, however, is in her intestines and the doctors can't reach it. So, we are hoping she'll pass it on her own- otherwise (Dare I say it??)- it's back to Cleveland Clinic for more surgery! The doctors said we should find the little diaper surprise within a day or so....that was 5 days ago so a phone call will be made to Cleveland Clinic GI tomorrow.
In other news:
Feeding Clinic- after Lexi's last episode of nickel eating, she is down 9 ounces...not good! The clinic is hoping she will re-gain the weight so we don't have to put her back on more tube feeds during the day. They are also having us do some oral stretches on Lexi's mouth and cheeks to try to encourage nerve reintervation in her face.
ENT- Lexi is scheduled for a swallow study on October 18th. We are praying that she can be given the "all clear" to try thin liquids without aspirating!
Allergy- the best news is that Lexi passed a 4 1/2 hour food challenge for egg. She no longer has ANY food allergies which is a huge blessing! We're hoping being able to add egg into her diet will help with weight gain!
Development- Lexi has become a little parrot. She sings ALL the time and knows ALL the words to songs. You can't always understand her since she can't say "M," "B" or "P" due to her facial nerve damage but she is so cute! She mimics everything we say! She is not using a lot of words on her own, but we are really focusing on comprehension with her. She is continuing to work on walking with new foot braces and is becoming stronger every month.
Please pray:
That this nickel passes through Lexi's system without any more surgery needed! This little one has been through enough!
Lexi has a big transition meeting on October 19th. At this meeting, we focus on transitioning her out of Help Me Grow and into the school system (which seems crazy to me!). We are struggling with what to do with Lexi. We can move her to Blanchard Valley Preschool or we can keep her home and have a preschool teacher come to our house 1 hour a week. This is a big decision and we don't know which direction to go with Lexi. I'm just not sure I"m ready to send my little princess off to preschool quite yet! Please pray we make the best decision for Lexi!
Finally, pray for Lexi's upcoming swallow study on October 18th. Lexi has had 7 swallow studies in the past 2 1/2 years and has yet to "pass" one. This would be a HUGE blessing for her to pass the test!
As always, thank you for your prayers. We'll be posting some new pictures soon!
Tuesday, August 2, 2011
A HUGE PRAISE!!
We took Lexi to Cleveland Clinic yesterday for four appointments. Here's the break-down of her day:
Opthomology- We had not seen Lexi's Optho for 4 or 5 months and he was very pleased with her progress. Lexi's eyes are much straighter than they were 5 months ago and the Dr. has ruled out her needing more eye surgery for at least the next 6 months!
ENT- The ENT has scheduled another swallow study for Lexi to see if she is still aspirating on thin liquids. This is probably one of her biggest obstacles still in eating/drinking! The swallow study will be in September.
Audiology- Lexi did much better on her hearing test this time and they have been able to rule out a moderate hearing loss! They are certain there is nothing major going on with her hearing and are guessing her extreme speech delays are due to her facial nerve damage.
Feeding Clinic- This was our most productive appointment of the day (although they all went well!). Lexi is exactly 3 feet tall and weights 27lbs 6 oz!! She is in the 30th percentile for her weight!!! The clinic was thrilled with her progress. SO, they have decided to take her off all her day time feeds!!! This means no more chasing her around the house on a tube! We only have to feed her through the night! This is a huge blessing and we are so excited! We have to make sure we really focus on keeping food in her to keep her weight up but we are very determined!!
Finally, the Physical Therapists Lexi sees have decided to put her in AFO's which are taller leg braces then she has been wearing. Lexi is still really unstable when she walks and tends to walk side to side instead of straight forward. We see a pediatric orthotist in Toledo on August 10th to get her fitted for some custom leg braces (can't wait to see THAT bill!) :-)
Please pray that:
We can keep Lexi's weight up and keep her off this feeding tube! This is a HUGE step forward to move her off her day-time feeds and I am determined that she will not move backwards!
Pray for Lexi's Ortho appointment on the 10th. Pray that the Orthotist will be able to find the right braces for Lexi to help her become a more stable walker.
Pray for her upcoming swallow study. Pray that Lexi gets an "all-clear" for thin liquids!
Thank you all for your continued prayers and support!
Opthomology- We had not seen Lexi's Optho for 4 or 5 months and he was very pleased with her progress. Lexi's eyes are much straighter than they were 5 months ago and the Dr. has ruled out her needing more eye surgery for at least the next 6 months!
ENT- The ENT has scheduled another swallow study for Lexi to see if she is still aspirating on thin liquids. This is probably one of her biggest obstacles still in eating/drinking! The swallow study will be in September.
Audiology- Lexi did much better on her hearing test this time and they have been able to rule out a moderate hearing loss! They are certain there is nothing major going on with her hearing and are guessing her extreme speech delays are due to her facial nerve damage.
Feeding Clinic- This was our most productive appointment of the day (although they all went well!). Lexi is exactly 3 feet tall and weights 27lbs 6 oz!! She is in the 30th percentile for her weight!!! The clinic was thrilled with her progress. SO, they have decided to take her off all her day time feeds!!! This means no more chasing her around the house on a tube! We only have to feed her through the night! This is a huge blessing and we are so excited! We have to make sure we really focus on keeping food in her to keep her weight up but we are very determined!!
Finally, the Physical Therapists Lexi sees have decided to put her in AFO's which are taller leg braces then she has been wearing. Lexi is still really unstable when she walks and tends to walk side to side instead of straight forward. We see a pediatric orthotist in Toledo on August 10th to get her fitted for some custom leg braces (can't wait to see THAT bill!) :-)
Please pray that:
We can keep Lexi's weight up and keep her off this feeding tube! This is a HUGE step forward to move her off her day-time feeds and I am determined that she will not move backwards!
Pray for Lexi's Ortho appointment on the 10th. Pray that the Orthotist will be able to find the right braces for Lexi to help her become a more stable walker.
Pray for her upcoming swallow study. Pray that Lexi gets an "all-clear" for thin liquids!
Thank you all for your continued prayers and support!
Thursday, July 14, 2011
Finally!! We are on the "up-swing!!"
Has it really been almost 4 months since I've updated this? I can't believe how quickly time flies! BUT, we have a lot of GOOD news to share this time!
Lexi has been making remarkable progress in the past few months. We finally got her heart, brain and spine MRI scheduled for the end of May. It was a 5 hour procedure and Lexi came through it all like a champ! The neurologist's office called us a few days later and told us that the findings on Lexi's brain MRI were "quite remarkable." Lexi's chiari malformation (brain stem hernation) has actually SHRUNK!! Her hernation was 9mm and it is now 6mm! That is quite a remarkable difference! The doctor said they never see this happen and really don't have an explanation for it....we do!! LOTS and lots of prayers from our many friends and family!! Thank you!! Lexi does still have what is considered a moderate chiari, but brain surgery is post-poned yet again for at least another 6 months! Praise the Lord!
Lexi's heart MRI also had pretty good results. Her cardiologist said they did find some additional narrowing in Lexi's blood vessels between her heart and her lungs. They are going to do more frequent Echo-cardiograms (every 2-3 months) for the next year to keep a close eye on the blood vessels and see how things progress. However, her other two narrowings are both "acceptable" so nothing else is needed right now!
Lexi has really taken off developmentally. She is toddling around and climbing on EVERYTHING, including our dishwasher door (which she broke and we had to replace!). Definitely blessings in disguise! :-) She is also starting to use some words on her own and LOVES to sing "Row row row your boat." Lexi is also eating pureed foods for every meal. She's still not able to chew or have a great deal of lip closure, but she is definitely gaining some weight!
I took Lexi to see the hospital pediatrician yesterday. He had not seen her for several months and he was very please with her progress. Perhaps some of the best news we received is that Lexi is up to 27 pounds! She is in the 25% on the growth chart for weight!! The hospital pediatrician took her off her thyroid medication, which means she is just down to two medications a day, AND he has taken her off her morning tube feed. Lexi has gone from 4 feeds daily to one at nap time and a continuous feed overnight. With her being so mobile now, only having her hooked up to a feeding tube while she is sleeping is a HUGE blessing for us!
Please pray that Lexi contiues to keep her weight up! Pray that we find the right foods to feed her (and the time to puree them all) so she does not have to add a feed back into her schedule.
Lexi will be attending Blanchard Valley Schools in the fall, probably once she turns three at the end of October. Jon and I are having a very difficult time sending her off to BVS. Please pray for a sense of peace and comfort for us!
After taking two entire months off of doctors appointments, we are heading up to Cleveland Clinic three times during the next month to get all of her appointments out of the way before she heads to school. Pray that all 10 of her appointments go well! We will keep you posted as we finish this long round of check-ups! We will be seeing ENT, GI, Opthomology, Neurology, Cardiology, Endocrinology, Allergy, and she will be having an audiology test, swallow study and 4 hour allergy test to see if she has outgrown her egg allergy! Shew! It's going to be a whirlwind! Pray for strength for sweet little Lexi!
Enjoy the rest of your summer! Lexi loves the water so we've been spending a lot of time out back in her baby pool!
Lexi has been making remarkable progress in the past few months. We finally got her heart, brain and spine MRI scheduled for the end of May. It was a 5 hour procedure and Lexi came through it all like a champ! The neurologist's office called us a few days later and told us that the findings on Lexi's brain MRI were "quite remarkable." Lexi's chiari malformation (brain stem hernation) has actually SHRUNK!! Her hernation was 9mm and it is now 6mm! That is quite a remarkable difference! The doctor said they never see this happen and really don't have an explanation for it....we do!! LOTS and lots of prayers from our many friends and family!! Thank you!! Lexi does still have what is considered a moderate chiari, but brain surgery is post-poned yet again for at least another 6 months! Praise the Lord!
Lexi's heart MRI also had pretty good results. Her cardiologist said they did find some additional narrowing in Lexi's blood vessels between her heart and her lungs. They are going to do more frequent Echo-cardiograms (every 2-3 months) for the next year to keep a close eye on the blood vessels and see how things progress. However, her other two narrowings are both "acceptable" so nothing else is needed right now!
Lexi has really taken off developmentally. She is toddling around and climbing on EVERYTHING, including our dishwasher door (which she broke and we had to replace!). Definitely blessings in disguise! :-) She is also starting to use some words on her own and LOVES to sing "Row row row your boat." Lexi is also eating pureed foods for every meal. She's still not able to chew or have a great deal of lip closure, but she is definitely gaining some weight!
I took Lexi to see the hospital pediatrician yesterday. He had not seen her for several months and he was very please with her progress. Perhaps some of the best news we received is that Lexi is up to 27 pounds! She is in the 25% on the growth chart for weight!! The hospital pediatrician took her off her thyroid medication, which means she is just down to two medications a day, AND he has taken her off her morning tube feed. Lexi has gone from 4 feeds daily to one at nap time and a continuous feed overnight. With her being so mobile now, only having her hooked up to a feeding tube while she is sleeping is a HUGE blessing for us!
Please pray that Lexi contiues to keep her weight up! Pray that we find the right foods to feed her (and the time to puree them all) so she does not have to add a feed back into her schedule.
Lexi will be attending Blanchard Valley Schools in the fall, probably once she turns three at the end of October. Jon and I are having a very difficult time sending her off to BVS. Please pray for a sense of peace and comfort for us!
After taking two entire months off of doctors appointments, we are heading up to Cleveland Clinic three times during the next month to get all of her appointments out of the way before she heads to school. Pray that all 10 of her appointments go well! We will keep you posted as we finish this long round of check-ups! We will be seeing ENT, GI, Opthomology, Neurology, Cardiology, Endocrinology, Allergy, and she will be having an audiology test, swallow study and 4 hour allergy test to see if she has outgrown her egg allergy! Shew! It's going to be a whirlwind! Pray for strength for sweet little Lexi!
Enjoy the rest of your summer! Lexi loves the water so we've been spending a lot of time out back in her baby pool!
Wednesday, March 23, 2011
March 23rd- The Waiting Game!
Well, unfortunately Lexi's MRI appointment has been rescheduled until April 26th! The MRI dept didn't realize Lexi needed a brain, heart AND spine MRI and did not schedule enough time (they'll need 5-6 hours instead of 3). We were very frustrated when they called because of all the preparations we have to make to get her to Cleveland (hotel, babysitters for twins, day off work for family going with me....) But, what do we do- ask for a discount? Yeah right! The GOOD news, however, is that I did not schedule any appointments in Cleveland until after the MRI- so it looks like we get a month-long break from Cleveland Clinic appointments! Hooray for a blessing in disguise! We probably won't update again until right after Easter!
Sunday, March 6, 2011
March 6- a very full day!
I'm a little behind in updating everyone on our most recent trip to Cleveland Clinic! Sorry!
We went to Cleveland Clinic on Friday, Feb 25th (actually decided to leave the night before to beat the major snow storm- SO glad we did!)
Lexi had 3 very lengthy appointments and here's the updates:
Nuerology- Unfortunately, this appointment with Lexi's neuro doctor did not go as well as we hoped. While Lexi IS making progress, the Dr. is concerned with how long her progress is taking. For instance, most toddlers will start taking a few steps and within a month or so, progress to full walking. Lexi has been taking a few steps for several months and isn't making as quick of progress as the doctor would like. He is concerned about her poor balance. This is one major symptom of a chiari (brain stem herniation). So, he has scheduled a brain MRI for March 22nd. Depending on the results of the MRI, he may also schedule a full-body nerve scan in April.
Cardiology- Lexi's cardiologist was pleased with the results from her EKG but, since the nuerologist is doing an MRI in a few weeks, the cardiologist decided instead of doing an echocardiogram, she will "tag on" a heart MRI after the brain MRI on the 22nd. This will give the cardiologist a very clear picture as to what is happening with Lexi's 2 heart defects.
ENT- This appointment took MUCH longer than expected. The ENT wanted to remove a significant amount of earwax from Lexi's ear. After almost an hour, it appears as though the Dr didn't realize exactly how much ear wax Lexi really had! But, the good news is that the ENT thinks the earwax may have been affecting Lexi's hearing. So, after finally getting out all the wax, they sent us directly to see an audiologist for a thorough hearing test. Unfortunately, they were unable to get a full test done (she shut down after about 30 minutes- it had been a LONG day!). They were able to conclude, however, that her ear drum IS working fine! They will repeat the test (AGAIN) in 2 months and are also planning another swallow study as Lexi still aspirates on thin liquids.
So, March 22nd, we go for a REALLY important MRI of Lexi's heart and brain. This entire process will take 4-5 hours and they will have to sedate her and put her on a ventilator while she is under. This, however, will give us very clear input as to whether or not she'll need brain surgery in the next few months (so, yes, we are VERY nervous about the test!)
Please pray that the results of the heart and brain MRI have a positive outcome! Pray for our family and little Lexi while she once again is put under and on a ventilator. It's always hard to see your little one go through so much!
I will update again after we get the results back from her MRI, which will be the week of March 28th!
As always, thank you for your continued prayers for Lexi Mae! She is making so much progress but still has a long road ahead of her!
We went to Cleveland Clinic on Friday, Feb 25th (actually decided to leave the night before to beat the major snow storm- SO glad we did!)
Lexi had 3 very lengthy appointments and here's the updates:
Nuerology- Unfortunately, this appointment with Lexi's neuro doctor did not go as well as we hoped. While Lexi IS making progress, the Dr. is concerned with how long her progress is taking. For instance, most toddlers will start taking a few steps and within a month or so, progress to full walking. Lexi has been taking a few steps for several months and isn't making as quick of progress as the doctor would like. He is concerned about her poor balance. This is one major symptom of a chiari (brain stem herniation). So, he has scheduled a brain MRI for March 22nd. Depending on the results of the MRI, he may also schedule a full-body nerve scan in April.
Cardiology- Lexi's cardiologist was pleased with the results from her EKG but, since the nuerologist is doing an MRI in a few weeks, the cardiologist decided instead of doing an echocardiogram, she will "tag on" a heart MRI after the brain MRI on the 22nd. This will give the cardiologist a very clear picture as to what is happening with Lexi's 2 heart defects.
ENT- This appointment took MUCH longer than expected. The ENT wanted to remove a significant amount of earwax from Lexi's ear. After almost an hour, it appears as though the Dr didn't realize exactly how much ear wax Lexi really had! But, the good news is that the ENT thinks the earwax may have been affecting Lexi's hearing. So, after finally getting out all the wax, they sent us directly to see an audiologist for a thorough hearing test. Unfortunately, they were unable to get a full test done (she shut down after about 30 minutes- it had been a LONG day!). They were able to conclude, however, that her ear drum IS working fine! They will repeat the test (AGAIN) in 2 months and are also planning another swallow study as Lexi still aspirates on thin liquids.
So, March 22nd, we go for a REALLY important MRI of Lexi's heart and brain. This entire process will take 4-5 hours and they will have to sedate her and put her on a ventilator while she is under. This, however, will give us very clear input as to whether or not she'll need brain surgery in the next few months (so, yes, we are VERY nervous about the test!)
Please pray that the results of the heart and brain MRI have a positive outcome! Pray for our family and little Lexi while she once again is put under and on a ventilator. It's always hard to see your little one go through so much!
I will update again after we get the results back from her MRI, which will be the week of March 28th!
As always, thank you for your continued prayers for Lexi Mae! She is making so much progress but still has a long road ahead of her!
Monday, January 10, 2011
January 10- I can't believe it!
We just got back from a very long day at Cleveland Clinic. Lexi saw three doctors today- the Feeding Clinic, Otolaryngology and GI. Imagine taking a now very mobile 2 year old (yet not mobile enough to let just run) to 3 doctors appointments for almost 5 hours. No toys, nothing "child friendly" AND very dirty hospital floors! (I mean, Cleveland Clinic is VERY clean, but they say a hospitals is the best place to get sick!) Needless to say, it was a really long day trying to keep Lexi from crawling on the floor and/or trashing the waiting room and doctors' offices!
Here's the update:
Feeding Clinic- I may have to repeat this twice (because I had to ask the nutrionist to say it twice!) Lexi gained OVER her goal!! I said OVER her goal! They want her to gain 10 grams a day- she gained 14!! AND she more than exceeded her goal for height! She is now 23lbs 13 oz and 2ft 9 inches. For the first time EVER, Lexi is now on the growth chart!!!! HOORAY!! This is a HUGE HUGE blessing! She's in the 10th percentile for weight and 25th percentile for height! We were hoping the Feeding Clinic would tell us we could begin to lessen her tube feeds, but they would like us to continue our current course and come again in 3-4 weeks. They are working on pumping as many calories into Lexi as they can and spent a great deal of time going over how to puree various table foods with me- no more baby food for this "big girl!" Did you know you can puree grilled cheese and peanut butter and jelly? I mean- who really needs to know that...unless you have a little one that doesn't know how to chew! So, tomorrow I begin to experiment with pureeing all sorts of table foods and then freezing them for Lexi to eat. Should be interesting (since I don't really cook!)
GI- The GI doctor was thrilled with Lexi's progress and said the next time we come, she will most likely need a bigger G-tube. We'd prefer her to not NEED a G-tube, but at least moving her to a bigger tube means she herself getting bigger! We are working with the GI doctor on changing up her feeding doses and rates to get her feeds done quicker. Right now it takes Lexi almost an hour to "feed" through her tube and this becomes very tasking to chase her around the house as she crawls or cruises everywhere. If we don't watch her, she can pull her G-tube completely out, which becomes a big mess. The tweaking of her feeds will take several months, but hopefully we will eventually be able to feed her over a half-hour instead!
Otolaryngology- We have decided to go ahead and pursue another round of vital stim for Lexi. So, in the beginning of February, we will add another 3 appointments a week back on to our schedule. (Vital stim is where they hook tiny electrodes to her face and send electric pulses to her face and throat for 1 hour, 3 times a week). Once this 3rd round of therapy is done, we'll attempt yet another swallow study to see if she still aspirates on thin liquids. Lexi also apparently has an extreme amount of ear wax in her right ear and they are concerned it is affecting her hearing. The doctor tried to remove it today, but keeping a squirming, screaming 2-year old still was not working well and they were concerned about damaging her ear drum. So, we will give her drops in her ears twice a day and "get to" go back to Cleveland Clinic in 2 weeks. The droplets should make the process a little easier! Once this is done, we will repeat the hearing test that she failed a few months ago!
Prayer Requests:
We go back to Cleveland Clinic on January 27th for Lexi's ears and an opthomology appointment. Pray all goes well and that the roads stay clear- traveling to Cleveland can be a bit tricky this time of year with all the snow they get!
Pray that Lexi continues to gain weight (and a HUGE praise she has gained so much). Also pray that I am able to figure out this whole pureeing process! We would really like for Lexi to learn how to chew to eat "normal" food but the Feeding Clinic said they have a little of kids that are unable to chew and do not require a feeding tube- pureeing food only changes to texture, not the calories! So, we will pursue this option with an open mind!
We hope you all had a Happy start to the New Year! We will post again after her next round of appointments!
Here's the update:
Feeding Clinic- I may have to repeat this twice (because I had to ask the nutrionist to say it twice!) Lexi gained OVER her goal!! I said OVER her goal! They want her to gain 10 grams a day- she gained 14!! AND she more than exceeded her goal for height! She is now 23lbs 13 oz and 2ft 9 inches. For the first time EVER, Lexi is now on the growth chart!!!! HOORAY!! This is a HUGE HUGE blessing! She's in the 10th percentile for weight and 25th percentile for height! We were hoping the Feeding Clinic would tell us we could begin to lessen her tube feeds, but they would like us to continue our current course and come again in 3-4 weeks. They are working on pumping as many calories into Lexi as they can and spent a great deal of time going over how to puree various table foods with me- no more baby food for this "big girl!" Did you know you can puree grilled cheese and peanut butter and jelly? I mean- who really needs to know that...unless you have a little one that doesn't know how to chew! So, tomorrow I begin to experiment with pureeing all sorts of table foods and then freezing them for Lexi to eat. Should be interesting (since I don't really cook!)
GI- The GI doctor was thrilled with Lexi's progress and said the next time we come, she will most likely need a bigger G-tube. We'd prefer her to not NEED a G-tube, but at least moving her to a bigger tube means she herself getting bigger! We are working with the GI doctor on changing up her feeding doses and rates to get her feeds done quicker. Right now it takes Lexi almost an hour to "feed" through her tube and this becomes very tasking to chase her around the house as she crawls or cruises everywhere. If we don't watch her, she can pull her G-tube completely out, which becomes a big mess. The tweaking of her feeds will take several months, but hopefully we will eventually be able to feed her over a half-hour instead!
Otolaryngology- We have decided to go ahead and pursue another round of vital stim for Lexi. So, in the beginning of February, we will add another 3 appointments a week back on to our schedule. (Vital stim is where they hook tiny electrodes to her face and send electric pulses to her face and throat for 1 hour, 3 times a week). Once this 3rd round of therapy is done, we'll attempt yet another swallow study to see if she still aspirates on thin liquids. Lexi also apparently has an extreme amount of ear wax in her right ear and they are concerned it is affecting her hearing. The doctor tried to remove it today, but keeping a squirming, screaming 2-year old still was not working well and they were concerned about damaging her ear drum. So, we will give her drops in her ears twice a day and "get to" go back to Cleveland Clinic in 2 weeks. The droplets should make the process a little easier! Once this is done, we will repeat the hearing test that she failed a few months ago!
Prayer Requests:
We go back to Cleveland Clinic on January 27th for Lexi's ears and an opthomology appointment. Pray all goes well and that the roads stay clear- traveling to Cleveland can be a bit tricky this time of year with all the snow they get!
Pray that Lexi continues to gain weight (and a HUGE praise she has gained so much). Also pray that I am able to figure out this whole pureeing process! We would really like for Lexi to learn how to chew to eat "normal" food but the Feeding Clinic said they have a little of kids that are unable to chew and do not require a feeding tube- pureeing food only changes to texture, not the calories! So, we will pursue this option with an open mind!
We hope you all had a Happy start to the New Year! We will post again after her next round of appointments!
Monday, December 27, 2010
December 28th- Holiday Whirlwind!
Well, Merry Belated Christmas! I did not realize how long it's been since we have posted about Lexi. My apologies! Life just gets in the way! :-) I'll try to keep this as brief as possible and PROMISE to do a better job updating this coming year. Plus, I took a self-prescribed break from Cleveland Clinic for November and December so we didn't have as much to report. Lexi had doctors that had asked to see her, but since nothing was life-threatening, I decided that mommy and Lexi needed a break from trips more than the doctors needed to see her! And yes- there IS still such a thing as taking control of your own (or your child's) medical decisions! Hooray! We REALLY REALLY enjoyed the break!
Here's the updates:
Lexi turned 2 on October 28th and celebrated with..... a doctors appointment of course!! She has finally gained weight and is up to almost 22 pounds! Still a peanut for 2 years old but we'll take it! I'm adding some new pictures to the site this week so be sure to check back for some cute birthday photos and Christmas photos. Unfortunately, we spent Thanksgiving day in the hospital with Lexi. She woke up Thanksgiving morning throwing up and had a low-grade temp. We weren't overly concerned until she refused to put any weight on her legs. She literally laid on the floor and cried for over 2 hours! With Lexi's brainstem herniation, odd behaviors like this really scare us! We paged the hospital pediatrician and he called us immediately and asked us to take her to the ER. So, we spent 4 hours in the ER. We felt terrible as Dr. Hannawalt decided to run a bunch of tests so they had to call in the X-ray techs, MRI techs and ultrasound techs on Thanksgiving! After all this, it turns out Lexi had something called "transient synovitis." Basically, she developed a viral infection that went to her hip joints. However, we're happy to report that this is probably the biggest "set-back" she's had in the last 3 months! If that's it, we'll take spending Thanksgiving Day in the Findlay hospital! Here's her other updates:
PT/OT- Lexi is crawling EVERYWHERE! We are trying really hard to be grateful, but she is in to everything and has absolutely no fear! She loves water....any kind of water.... especially......toilet water! We need someone to develop automatic toilet seats that close when little girls are done with them! Lexi also took TEN steps 2 weeks ago when the PT was working with her. Hooray! She's a long way from walking independently, but the fact that she can take a few steps means she WILL walk eventually and that's what keeps up motivated!
Speech- Lexi is our little parrot- she repeats everything we say. Unfortunately, she still isn't able to say and "m's," "b's" or "p's." If you think about it, this is such a vital part of our language. So, it's really hard to make out many words. Lexi calls me "nana" my mom "no no" (for momo), and my dad "tata" (for papa). We completed yet another round of vital stim therapy in October with a wonderful speech therapist that came to our house but we have not seen a ton of improvement! We are going to attempt yet another round of vital stim in February. However, adding 3 appointment a week to our 5 appointments already makes it really difficult to manage!
Feeding- Lexi has made a few small improvements in eating. Someone gave us a Magic Bullet and this has been a HUGE help in trying new foods with Lexi. We also got a great deal on a travel-size hand mixer so we are able to take it with us and puree anything she eats. It is difficult, however, for the past 2 years to specially prepare all of Lexi's food and then feed it to her. Those of you that are newer parents- you may remember the sigh of relief when your child started feeding themselves and you could actually enjoy a meal! We are still not to that point (you'd think I'd be 100 pounds too after all the running around I do during meals! ha!) We are hopeful that Lexi will pick up the whole idea of eating AND chewing sooner than later! This is probably the most daunting task of caring for her. We hate her feeding bag as it beeps many times at night, gets caught on toys, etc and we are constantly running after her when she's on a feed because she's so mobile but not big enough to hold the feeding bag on her back yet.
Specific Prayer Requests:
We go to Cleveland Clinic January 6th, 10th and 25th (AND we are taking a MUCH needed vacation in the middle of those appointments!). Pray that the appointments go well and that the doctors see big improvements with Lexi. We see ENT, GI, Feeding Clinic and Opthomology in January. In February, we will see the cardiologist and neurologist. At this time, they will schedule an MRI for Lexi's heart and brain to check her progress and determine if brain and/or additional heart surgery is needed. We are praying ALREADY that we can once again post-pone more surgeries!
As always, pray for strength, endurance and patience for Jon and I. It is exhausting to keep up with all of Lexi's appointments and medical needs and I have greatly enjoyed the past 6 weeks off! Pray that I have a good attitude heading into the New Year (and crazy schedule again) and that we can manage our time wisely to accommodate everything Lexi Mae needs!
Finally, Jon is taking 5 college classes (15 hours) to finish up his degree in Business Management from Liberty University and I must take 6 additional hours of master classes to keep my teaching license renewed. I honestly don't know how we are going to manage all of this before June!! We need LOTS of prayers that our hours are spent wisely and that we can still find time to be with the girls and work with Lexi on her therapies while doing studies as well!
Thank you all for your continued support! We have had many unexpected gifts this Christmas season. It means so much to our family that so many realize that Lexi is making HUGE progress but still has a lot of obstacles a head of her. We covet your prayers! I promise to make a better effort at updating her blog- we will definitely do so after her 1st round of appointments on January 1oth!
Praying for a blessed New Year for all of you!
Here's the updates:
Lexi turned 2 on October 28th and celebrated with..... a doctors appointment of course!! She has finally gained weight and is up to almost 22 pounds! Still a peanut for 2 years old but we'll take it! I'm adding some new pictures to the site this week so be sure to check back for some cute birthday photos and Christmas photos. Unfortunately, we spent Thanksgiving day in the hospital with Lexi. She woke up Thanksgiving morning throwing up and had a low-grade temp. We weren't overly concerned until she refused to put any weight on her legs. She literally laid on the floor and cried for over 2 hours! With Lexi's brainstem herniation, odd behaviors like this really scare us! We paged the hospital pediatrician and he called us immediately and asked us to take her to the ER. So, we spent 4 hours in the ER. We felt terrible as Dr. Hannawalt decided to run a bunch of tests so they had to call in the X-ray techs, MRI techs and ultrasound techs on Thanksgiving! After all this, it turns out Lexi had something called "transient synovitis." Basically, she developed a viral infection that went to her hip joints. However, we're happy to report that this is probably the biggest "set-back" she's had in the last 3 months! If that's it, we'll take spending Thanksgiving Day in the Findlay hospital! Here's her other updates:
PT/OT- Lexi is crawling EVERYWHERE! We are trying really hard to be grateful, but she is in to everything and has absolutely no fear! She loves water....any kind of water.... especially......toilet water! We need someone to develop automatic toilet seats that close when little girls are done with them! Lexi also took TEN steps 2 weeks ago when the PT was working with her. Hooray! She's a long way from walking independently, but the fact that she can take a few steps means she WILL walk eventually and that's what keeps up motivated!
Speech- Lexi is our little parrot- she repeats everything we say. Unfortunately, she still isn't able to say and "m's," "b's" or "p's." If you think about it, this is such a vital part of our language. So, it's really hard to make out many words. Lexi calls me "nana" my mom "no no" (for momo), and my dad "tata" (for papa). We completed yet another round of vital stim therapy in October with a wonderful speech therapist that came to our house but we have not seen a ton of improvement! We are going to attempt yet another round of vital stim in February. However, adding 3 appointment a week to our 5 appointments already makes it really difficult to manage!
Feeding- Lexi has made a few small improvements in eating. Someone gave us a Magic Bullet and this has been a HUGE help in trying new foods with Lexi. We also got a great deal on a travel-size hand mixer so we are able to take it with us and puree anything she eats. It is difficult, however, for the past 2 years to specially prepare all of Lexi's food and then feed it to her. Those of you that are newer parents- you may remember the sigh of relief when your child started feeding themselves and you could actually enjoy a meal! We are still not to that point (you'd think I'd be 100 pounds too after all the running around I do during meals! ha!) We are hopeful that Lexi will pick up the whole idea of eating AND chewing sooner than later! This is probably the most daunting task of caring for her. We hate her feeding bag as it beeps many times at night, gets caught on toys, etc and we are constantly running after her when she's on a feed because she's so mobile but not big enough to hold the feeding bag on her back yet.
Specific Prayer Requests:
We go to Cleveland Clinic January 6th, 10th and 25th (AND we are taking a MUCH needed vacation in the middle of those appointments!). Pray that the appointments go well and that the doctors see big improvements with Lexi. We see ENT, GI, Feeding Clinic and Opthomology in January. In February, we will see the cardiologist and neurologist. At this time, they will schedule an MRI for Lexi's heart and brain to check her progress and determine if brain and/or additional heart surgery is needed. We are praying ALREADY that we can once again post-pone more surgeries!
As always, pray for strength, endurance and patience for Jon and I. It is exhausting to keep up with all of Lexi's appointments and medical needs and I have greatly enjoyed the past 6 weeks off! Pray that I have a good attitude heading into the New Year (and crazy schedule again) and that we can manage our time wisely to accommodate everything Lexi Mae needs!
Finally, Jon is taking 5 college classes (15 hours) to finish up his degree in Business Management from Liberty University and I must take 6 additional hours of master classes to keep my teaching license renewed. I honestly don't know how we are going to manage all of this before June!! We need LOTS of prayers that our hours are spent wisely and that we can still find time to be with the girls and work with Lexi on her therapies while doing studies as well!
Thank you all for your continued support! We have had many unexpected gifts this Christmas season. It means so much to our family that so many realize that Lexi is making HUGE progress but still has a lot of obstacles a head of her. We covet your prayers! I promise to make a better effort at updating her blog- we will definitely do so after her 1st round of appointments on January 1oth!
Praying for a blessed New Year for all of you!
Friday, September 24, 2010
1 week- 3 hospitals!
Wow! What a crazy past month it has been! Lexi has made so many improvements over the past few weeks. She is now crawling, pulling to stand and walking while holding our hands. She's even able to stand on her own for a few seconds. She is so proud of herself!! Here is the latest- it has been an eventful week!
This week, we took Lexi to Cleveland Clinic for a swallow study and feeding clinic appointment. We were hoping for great results since Lexi has been doing well with her eating. Lexi can sometimes eat up to 8 oz of baby food AND she is drinking from a straw!! She loses half of it out her mouth since she isn't able to make great lip closer- BUT she's doing it! Unfortunately, we were VERY disappointed to see that she is still aspirating on thin liquids. So, it's back to another round of vital stim (where they put little electrodes on her face for an hour and "shock it"). The biggest blessing, however, is that a family friend, who is speech therapist, does vital stim. So, instead of driving clear over to Fostoria, she has offered to come to our house!! What a HUGE answer to prayer! While I am not looking forward to adding THREE additional appointments a week to our already too-full schedule, I'm thankful Diane is willing to help us so much!
On Thursday, we took Lexi down to Columbus Childrens to a developmental toy library. An OT spent an hour with us looking through a variety of toys and trying to find adaptive toys that Lexi will be able to use. Lexi lacks a great deal of coordination AND motivation. We are trying to find toys that will motivate her to crawl (and some day WALK) over to them. We have a great list started for her 2-year old Birthday and Christmas!
Another update is that last week we took Lexi to Cleveland for an audiology test. Due to her lack of speech, they wanted to do a thorough exam of her hearing. Unfortunately, Lexi did not do very well with the testing. However, the doctors were unable to determine whether Lexi has a hearing issue or simply didn't feel like participating! So, we are really focusing on "hearing" exercises during speech therapy and will try again in 3 months.
Finally, today we had quite a scare! I went in to get Lexi out of bed this morning and her mic-key button was laying in her bed! There was formula everywhere! Her button does come out from time to time so I thought I'd just pop it back in. I couldn't get it in. I called Jon home from work- he couldn't get it in. After a call to Cleveland Clinic, we determined it must have come out early in the night and was now closing shut. Fortunately, the pediatric hospitalist at Blanchard Valley was able to re-open it - after a VERY traumatic experience! They had to give her shots right into her belly and then re-open the closed hole with surgical scissors. I must admit, I am pretty tough, but I had a major melt-down in the ER. As a parent, it is so difficult to see your sweet little one go through such traumatic situations! Lexi is doing well now though and we are thankful we didn't have to make an emergency trip to Cleveland again this week.
We are fortunate to have a week off next week to celebrate the twin's 3rd Birthday and then we head back on October 5th for 2 very important appointments. We will see Opthomology to discuss possible eye surgery again and we will also see Neurology to discuss how her chiari malformation is going and whether or not she will need surgery this next year.
Prayer requests:
We have a huge answer to prayer that we can get vital stim in our home. But, PLEASE pray for our family as we add additional appointments. We typically go to Cleveland Clinic once a week and then we will have: Vital stim treatments and Blanchard Valley Therapists on Mondays, OT/PT at the hospital on Tuesdays, Vital Stim on Wednesdays, Speech at the hospital on Thursdays and vital stim on Fridays. PLUS usually 1 local doctors appointment a week to check weight, mic-key button, etc. I'm exhausted and am trying to find a way to add more hours into my day to work 4 side jobs (helping my dad at his office 1 day a week, piano lessons for 6 students, Tastefully Simple and Children of the Light), manage a household, run Lexi to appointments and try to be a mommy to the twins. Please pray for strength and energy!
Pray for GOOD results at our 2 upcoming appointments. Lexi's swallow study was a major set-back for us and we are disappointed that she has not made improvement in her swallowing. We must continue to thicken all of her liquids. Pray that we get better news at our next appointments.
On a side note- today while we were waiting in the ER, we told Lexi that the doctor would be coming in soon. She looked right at us and said CLEARLY "Doctor!" So cute, but so sad that she knows so many doctors so young! :-)
As always, thank you all for your continued prayers and concern for Lexi!
This week, we took Lexi to Cleveland Clinic for a swallow study and feeding clinic appointment. We were hoping for great results since Lexi has been doing well with her eating. Lexi can sometimes eat up to 8 oz of baby food AND she is drinking from a straw!! She loses half of it out her mouth since she isn't able to make great lip closer- BUT she's doing it! Unfortunately, we were VERY disappointed to see that she is still aspirating on thin liquids. So, it's back to another round of vital stim (where they put little electrodes on her face for an hour and "shock it"). The biggest blessing, however, is that a family friend, who is speech therapist, does vital stim. So, instead of driving clear over to Fostoria, she has offered to come to our house!! What a HUGE answer to prayer! While I am not looking forward to adding THREE additional appointments a week to our already too-full schedule, I'm thankful Diane is willing to help us so much!
On Thursday, we took Lexi down to Columbus Childrens to a developmental toy library. An OT spent an hour with us looking through a variety of toys and trying to find adaptive toys that Lexi will be able to use. Lexi lacks a great deal of coordination AND motivation. We are trying to find toys that will motivate her to crawl (and some day WALK) over to them. We have a great list started for her 2-year old Birthday and Christmas!
Another update is that last week we took Lexi to Cleveland for an audiology test. Due to her lack of speech, they wanted to do a thorough exam of her hearing. Unfortunately, Lexi did not do very well with the testing. However, the doctors were unable to determine whether Lexi has a hearing issue or simply didn't feel like participating! So, we are really focusing on "hearing" exercises during speech therapy and will try again in 3 months.
Finally, today we had quite a scare! I went in to get Lexi out of bed this morning and her mic-key button was laying in her bed! There was formula everywhere! Her button does come out from time to time so I thought I'd just pop it back in. I couldn't get it in. I called Jon home from work- he couldn't get it in. After a call to Cleveland Clinic, we determined it must have come out early in the night and was now closing shut. Fortunately, the pediatric hospitalist at Blanchard Valley was able to re-open it - after a VERY traumatic experience! They had to give her shots right into her belly and then re-open the closed hole with surgical scissors. I must admit, I am pretty tough, but I had a major melt-down in the ER. As a parent, it is so difficult to see your sweet little one go through such traumatic situations! Lexi is doing well now though and we are thankful we didn't have to make an emergency trip to Cleveland again this week.
We are fortunate to have a week off next week to celebrate the twin's 3rd Birthday and then we head back on October 5th for 2 very important appointments. We will see Opthomology to discuss possible eye surgery again and we will also see Neurology to discuss how her chiari malformation is going and whether or not she will need surgery this next year.
Prayer requests:
We have a huge answer to prayer that we can get vital stim in our home. But, PLEASE pray for our family as we add additional appointments. We typically go to Cleveland Clinic once a week and then we will have: Vital stim treatments and Blanchard Valley Therapists on Mondays, OT/PT at the hospital on Tuesdays, Vital Stim on Wednesdays, Speech at the hospital on Thursdays and vital stim on Fridays. PLUS usually 1 local doctors appointment a week to check weight, mic-key button, etc. I'm exhausted and am trying to find a way to add more hours into my day to work 4 side jobs (helping my dad at his office 1 day a week, piano lessons for 6 students, Tastefully Simple and Children of the Light), manage a household, run Lexi to appointments and try to be a mommy to the twins. Please pray for strength and energy!
Pray for GOOD results at our 2 upcoming appointments. Lexi's swallow study was a major set-back for us and we are disappointed that she has not made improvement in her swallowing. We must continue to thicken all of her liquids. Pray that we get better news at our next appointments.
On a side note- today while we were waiting in the ER, we told Lexi that the doctor would be coming in soon. She looked right at us and said CLEARLY "Doctor!" So cute, but so sad that she knows so many doctors so young! :-)
As always, thank you all for your continued prayers and concern for Lexi!
Friday, August 6, 2010
August 6th- Relaxing Summer is Over
We just finished a crazy week with Lexi- 16 appointments! We are so glad it's over! Here are several updates:
We have been taking Lexi to Fostoria twice a week for Vital Stim therapy. She absolutely hates it! They now have to tape the 8 electrodes to her face and neck because she snaps them off so quickly. We have seen an increase in drooling, which we hope is a good sign that her nerves are working! She has a swallow study scheduled for September 21st to see if she is still aspirating.
We took Lexi to Cleveland Clinic for 2 days (9 appointments) this week. She saw cardiology and things checked out really well! They still want to do another MRI of her heart because they are concerned her blood vessels leading away from her heart are too narrow. But, we will be able to wait and combine it with her next brain MRI to save her the sedation process. That will be sometime this fall. We are so glad that her heart is doing so well!
Lexi also saw the allergist and completed a four hour milk challenge. They had us sit in a room and they fed her milk starting with a small amount and ending with a large amount. Then, we waited to see what happened. She passed her milk challenge with no issues at all!! This means she has outgrown her milk allergy! We are very excited to get this little peanut on some milkshakes and whipping cream! Lexi has never had ANY dairy so we'll see what she thinks.
Finally, the other "major" appointment we had was with the feeding clinic. Lexi is supposed to gain 10 grams a day. We last saw the feeding clinic in June. Since June, she has gained 10 grams TOTAL!! Ugh! They are concerned that she is not absorbing all of her food. So, we have an appointment with GI on August 25th to look at probable causes. We're going to pray that it is nothing serious.
On a side note- Lexi is making HUGE progress with her large motor. She is starting to crawl!! We are so excited! We are also making some gains with her feeding. Not as many as we'd like, but we'll take the small gains too!
Finally, we are still looking into Sensory Integration Therapy for Lexi and exploring some ways to fund the $3200 for this. If anyone has suggestions, we are open to them.
You can e-mail us at thehocansons@yahoo.com
Please pray for:
Our many appointments. With 4 therapies a week plus vital stim 2-3 times a week and various doctor's appointments, I feel REALLY overwhelmed and REALLY behind on "life" (bills, cleaning, etc). Pray for time management and a lot of strength.
Pray that we are able to find various ways to provide the $3200 for Lexi's sensory treatments. We went to Toledo a few weeks ago to meet with the team and do an "experimental session" and it went really well. We REALLY think this treatment will help Lexi but insurance has denied covering it. Pray that we are able to make the best decision for Lexi!
Finally, with all the prayer requests- we wanted to share 2 praises:
1. Lexi has been put into ankle braces called "sure-steps." She turns her ankles in when she tries to take steps or stand (pronates). So, these braces will help keep her ankles where they should be! The braces are $1800! BUT, we were able to participate in a study with Sure-step and they are covering the ENTIRE cost of the braces AND the appointments that go with it!
2. We have a family friend that is a speech therapist. She saw a post on facebook about vital stim. She works in a nearby town and has graciously worked it out that she will come to our house to do Lexi's next round of 12 treatments!! This is a HUGE blessing as taking 3 hours a day, 3 days a week is becoming too much to handle! Thank you Diane!!
Once again, thank you for your continued prayers and genuine interest in Lexi's progress.
We have been taking Lexi to Fostoria twice a week for Vital Stim therapy. She absolutely hates it! They now have to tape the 8 electrodes to her face and neck because she snaps them off so quickly. We have seen an increase in drooling, which we hope is a good sign that her nerves are working! She has a swallow study scheduled for September 21st to see if she is still aspirating.
We took Lexi to Cleveland Clinic for 2 days (9 appointments) this week. She saw cardiology and things checked out really well! They still want to do another MRI of her heart because they are concerned her blood vessels leading away from her heart are too narrow. But, we will be able to wait and combine it with her next brain MRI to save her the sedation process. That will be sometime this fall. We are so glad that her heart is doing so well!
Lexi also saw the allergist and completed a four hour milk challenge. They had us sit in a room and they fed her milk starting with a small amount and ending with a large amount. Then, we waited to see what happened. She passed her milk challenge with no issues at all!! This means she has outgrown her milk allergy! We are very excited to get this little peanut on some milkshakes and whipping cream! Lexi has never had ANY dairy so we'll see what she thinks.
Finally, the other "major" appointment we had was with the feeding clinic. Lexi is supposed to gain 10 grams a day. We last saw the feeding clinic in June. Since June, she has gained 10 grams TOTAL!! Ugh! They are concerned that she is not absorbing all of her food. So, we have an appointment with GI on August 25th to look at probable causes. We're going to pray that it is nothing serious.
On a side note- Lexi is making HUGE progress with her large motor. She is starting to crawl!! We are so excited! We are also making some gains with her feeding. Not as many as we'd like, but we'll take the small gains too!
Finally, we are still looking into Sensory Integration Therapy for Lexi and exploring some ways to fund the $3200 for this. If anyone has suggestions, we are open to them.
You can e-mail us at thehocansons@yahoo.com
Please pray for:
Our many appointments. With 4 therapies a week plus vital stim 2-3 times a week and various doctor's appointments, I feel REALLY overwhelmed and REALLY behind on "life" (bills, cleaning, etc). Pray for time management and a lot of strength.
Pray that we are able to find various ways to provide the $3200 for Lexi's sensory treatments. We went to Toledo a few weeks ago to meet with the team and do an "experimental session" and it went really well. We REALLY think this treatment will help Lexi but insurance has denied covering it. Pray that we are able to make the best decision for Lexi!
Finally, with all the prayer requests- we wanted to share 2 praises:
1. Lexi has been put into ankle braces called "sure-steps." She turns her ankles in when she tries to take steps or stand (pronates). So, these braces will help keep her ankles where they should be! The braces are $1800! BUT, we were able to participate in a study with Sure-step and they are covering the ENTIRE cost of the braces AND the appointments that go with it!
2. We have a family friend that is a speech therapist. She saw a post on facebook about vital stim. She works in a nearby town and has graciously worked it out that she will come to our house to do Lexi's next round of 12 treatments!! This is a HUGE blessing as taking 3 hours a day, 3 days a week is becoming too much to handle! Thank you Diane!!
Once again, thank you for your continued prayers and genuine interest in Lexi's progress.
Friday, July 9, 2010
Friday, July 9th- A Relaxing Summer!
It is amazing to us that it is already July! Time just zooms by when you have 3 little ones! We are so thankful that we have managed to NOT have any Cleveland Clinic trips this month. For the month of July, we only have a few local doctors appointments and our weekly therapy sessions. Here's what's happening with Lexi:
Lexi has really been taking off in large motor! She is pulling to stand all the time! In fact, she only wants to stand and when you make her sit down, she gets really mad. She has also been saying some new words and doing a few signs. No crawling yet, but we are getting closer every week. Obviously, she is SIGNIFICANTLY behind kids her age, but Lexi's just not like other kids- she's super cute and super unique!:-)
We have decided, however, since things with her speech and especially her eating are not progressing as we would like, we are looking for additional therapies and treatments for her. We have found a newer therapy that is FDA approved called Vital Stim therapy. We have been fortunate enough to find a speech therapist in Fostoria that is able to do this therapy on infants. Vital Stim is basically an electrode therapy that sends small currents into her face and neck to stimulate swallowing. Unfortunately, the therapist is a 40 minute drive from our house and, starting today, we will be trying to go 2-3 times per week! This will be in addition to her weekly OT, PT and speech at the outpatient rehab in Findlay and her weekly visits from Blanchard Valley therapists. But, we are hoping (and praying!) that it is going to help her swallowing as she is STILL aspirating on liquids.
In addition, we have found and done extensive research on a newer treatment called the sensory learning program. A lot of kids that have major trauma early in their life tend to have sensory integration issues. Lexi scratches herself until she bleeds, grinds her teeth, has strong aversions to textures in foods and tends to flap her hands. Jon and I attended a 2-hour session on the program this week and again, we really think it can be a help to Lexi. The program uses light (visual), sound (auditory) and movement (vestibular) to help "re-program" the neuro-pathways in the brain. However (again), we will have to commit to a consecutive 12-day session in Toledo- TWO times a day followed by 18 days of therapy at home. The cost of the program is $3200 and, of course, is not covered by any of our insurance. I have been spending hours on the computer searching for grants to help cover this but a majority of grants wont' cover "alternative" therapy (even though it's done BY a doctor IN a doctor's office!). However, at this point, we will do whatever we can to help Lexi improve. Even if this program helps her simply stop scratching herself- it would be worth it to us! If you're curious about it, you can check it out at sensorylearning-toledo.com
Prayer Requests:
Please pray that we are able to manage our time as we add vital stim therapy to Lexi's round of treatments. Pray that I am able to find childcare for the twins while I take almost 3 hours a day, 2-3 times a week to run Lexi to vital stim therapy.
Pray that we are led to the right grants and resources to help us cover even part of this Sensory Learning Program. If not, pray we can find ways to cut our budget even further to help with the costs of the treatment.
We will be heading to Cleveland Clinic at the very beginning of August for 9 appointments in 2 days and then 2 other times in August, as well as a trip to Columbus to see a pediatric developmental specialist again. We plan to enjoy the month of July before the crazy trips start again! Happy Summer and thank you for your continued prayers!
Lexi has really been taking off in large motor! She is pulling to stand all the time! In fact, she only wants to stand and when you make her sit down, she gets really mad. She has also been saying some new words and doing a few signs. No crawling yet, but we are getting closer every week. Obviously, she is SIGNIFICANTLY behind kids her age, but Lexi's just not like other kids- she's super cute and super unique!:-)
We have decided, however, since things with her speech and especially her eating are not progressing as we would like, we are looking for additional therapies and treatments for her. We have found a newer therapy that is FDA approved called Vital Stim therapy. We have been fortunate enough to find a speech therapist in Fostoria that is able to do this therapy on infants. Vital Stim is basically an electrode therapy that sends small currents into her face and neck to stimulate swallowing. Unfortunately, the therapist is a 40 minute drive from our house and, starting today, we will be trying to go 2-3 times per week! This will be in addition to her weekly OT, PT and speech at the outpatient rehab in Findlay and her weekly visits from Blanchard Valley therapists. But, we are hoping (and praying!) that it is going to help her swallowing as she is STILL aspirating on liquids.
In addition, we have found and done extensive research on a newer treatment called the sensory learning program. A lot of kids that have major trauma early in their life tend to have sensory integration issues. Lexi scratches herself until she bleeds, grinds her teeth, has strong aversions to textures in foods and tends to flap her hands. Jon and I attended a 2-hour session on the program this week and again, we really think it can be a help to Lexi. The program uses light (visual), sound (auditory) and movement (vestibular) to help "re-program" the neuro-pathways in the brain. However (again), we will have to commit to a consecutive 12-day session in Toledo- TWO times a day followed by 18 days of therapy at home. The cost of the program is $3200 and, of course, is not covered by any of our insurance. I have been spending hours on the computer searching for grants to help cover this but a majority of grants wont' cover "alternative" therapy (even though it's done BY a doctor IN a doctor's office!). However, at this point, we will do whatever we can to help Lexi improve. Even if this program helps her simply stop scratching herself- it would be worth it to us! If you're curious about it, you can check it out at sensorylearning-toledo.com
Prayer Requests:
Please pray that we are able to manage our time as we add vital stim therapy to Lexi's round of treatments. Pray that I am able to find childcare for the twins while I take almost 3 hours a day, 2-3 times a week to run Lexi to vital stim therapy.
Pray that we are led to the right grants and resources to help us cover even part of this Sensory Learning Program. If not, pray we can find ways to cut our budget even further to help with the costs of the treatment.
We will be heading to Cleveland Clinic at the very beginning of August for 9 appointments in 2 days and then 2 other times in August, as well as a trip to Columbus to see a pediatric developmental specialist again. We plan to enjoy the month of July before the crazy trips start again! Happy Summer and thank you for your continued prayers!
Thursday, June 3, 2010
Thursday, June 3rd- still a peanut!
I am thankful for the many people we run into either at church, the grocery store, on FB, etc that tell us they read Lexi's blog and are praying for her and us! It reminds me to take the time out of our hectic days to update everyone on Miss Lexi Mae!
We went to Cleveland Clinic last week and they did another scope/swallow study on Lexi. For this procedure, we literally hold her head and body down and they stick a tiny camera down her nose and into her throat (yes- she SCREAMS!). Then, they feed her various consistencies of food to see if she clears it or if she aspirates (Liquid goes into her lungs). Unfortunately, Lexi aspirated on slightly thickened juice. This was disappointing as we were hoping she was getting better at controlling things in her mouth. For now, we will continue to thicken anything that goes into her mouth and repeat the study in 4 months.
We saw the pediatric hospitalists today at our local hospital. He is helping us monitor Lexi's growth and development since we are not seeing the feeding clinic weekly any more. We were REALLY hoping Lexi would hit the 20 lb mark, but, she's at 19lbs 13oz. (This is what the twins were at EIGHT months old- Lexi is 19 months). It is hard to not blame yourself as a parent and we keep asking "what are we doing wrong?" For the next month, we just have to make sure that we give her every drop of every feed and encourage her to take as much as she can by mouth (which is what we HAVE been doing). We're also going to really start praying that she can start gaining weight, or it's back to Cleveland Clinic for more testing. However, Lexi DID at least gain a little weight so we are heading the right direction!:-) She is just not making many strides in her oral feeding and we are becoming concerned that this might not ever get better!
We are very thankful for our break from Cleveland Clinic trips- we don't have to go back until June 17th to talk to Opthomology about her next eye surgery!
At 1 1/2 years old, it's easy to look at all the things Lexi "can't" do, but we recently had her goal review meeting with her Early Intervention program and it was encouraging to see the strides she has made! Lexi can't do a lot for most kids her age, but she has made HUGE improvements the past few months. She is working really hard to crawl and is almost ready to pull to stand on her own. She is saying a few words- "dada" is the favorite but she also says "nana" (meaning Mama!) "good girl,"" all done", "up", "ouch" (poor baby!) and "Ally" (her oldest twin sister). She also does the motions for "so big." We have learned that we can't look at Lexi as a typical 1 1/2 year old. We have to look at her for how much she has gone through and how far she has come!
Prayer Requests:
I leave on Children of the Light tour on Monday. Children of the Light is a singing group sponsored by Youth for Christ here in Findlay and I am the director of the group. I completely set up and run the entire trip- we're going to Viriginia. I have to leave all the kids and Jon for a week and I'm having a really difficult time. Pray for Jon as he works all week and then has all 3 kids by himself all evening. Pray that he finds the time to keep Lexi's feeds up and all her therapy sessions.
Pray for GROWTH for Lexi. The poor baby still has to be rear-facing in a car seat! We're ready for Lexi to be "so big!"
We went to Cleveland Clinic last week and they did another scope/swallow study on Lexi. For this procedure, we literally hold her head and body down and they stick a tiny camera down her nose and into her throat (yes- she SCREAMS!). Then, they feed her various consistencies of food to see if she clears it or if she aspirates (Liquid goes into her lungs). Unfortunately, Lexi aspirated on slightly thickened juice. This was disappointing as we were hoping she was getting better at controlling things in her mouth. For now, we will continue to thicken anything that goes into her mouth and repeat the study in 4 months.
We saw the pediatric hospitalists today at our local hospital. He is helping us monitor Lexi's growth and development since we are not seeing the feeding clinic weekly any more. We were REALLY hoping Lexi would hit the 20 lb mark, but, she's at 19lbs 13oz. (This is what the twins were at EIGHT months old- Lexi is 19 months). It is hard to not blame yourself as a parent and we keep asking "what are we doing wrong?" For the next month, we just have to make sure that we give her every drop of every feed and encourage her to take as much as she can by mouth (which is what we HAVE been doing). We're also going to really start praying that she can start gaining weight, or it's back to Cleveland Clinic for more testing. However, Lexi DID at least gain a little weight so we are heading the right direction!:-) She is just not making many strides in her oral feeding and we are becoming concerned that this might not ever get better!
We are very thankful for our break from Cleveland Clinic trips- we don't have to go back until June 17th to talk to Opthomology about her next eye surgery!
At 1 1/2 years old, it's easy to look at all the things Lexi "can't" do, but we recently had her goal review meeting with her Early Intervention program and it was encouraging to see the strides she has made! Lexi can't do a lot for most kids her age, but she has made HUGE improvements the past few months. She is working really hard to crawl and is almost ready to pull to stand on her own. She is saying a few words- "dada" is the favorite but she also says "nana" (meaning Mama!) "good girl,"" all done", "up", "ouch" (poor baby!) and "Ally" (her oldest twin sister). She also does the motions for "so big." We have learned that we can't look at Lexi as a typical 1 1/2 year old. We have to look at her for how much she has gone through and how far she has come!
Prayer Requests:
I leave on Children of the Light tour on Monday. Children of the Light is a singing group sponsored by Youth for Christ here in Findlay and I am the director of the group. I completely set up and run the entire trip- we're going to Viriginia. I have to leave all the kids and Jon for a week and I'm having a really difficult time. Pray for Jon as he works all week and then has all 3 kids by himself all evening. Pray that he finds the time to keep Lexi's feeds up and all her therapy sessions.
Pray for GROWTH for Lexi. The poor baby still has to be rear-facing in a car seat! We're ready for Lexi to be "so big!"
Wednesday, May 5, 2010
Wednesday, May 5th- Postponed again!
My sister Holly and I traveled to Cleveland Clinic yesterday with Lexi. Here's the latest on our marathon:
We were able to see Lexi's neurologist, Dr. Friedman, who has seen Lexi from the very beginning on her issues following heart surgery. He has been working directly with a separate neurosurgeon from Rainbow Babies in Cleveland in regards to Lexi. Dr Friedman agrees that we can (and should) at this point, postpone Lexi's chiari brain surgery. Developmentally, Lexi has really taken off the last month or so. Lexi is starting to babble, get on her hands and knees and is even starting to pull herself up to stand. Her developmental pediatrician would really hate to see us interrupt her developmental upswing with brain surgery. However, due to the size of her brain stem herniation, we will have to keep a close eye on her, do our best to ensure she receives no injuries to her head, and then re-evaluate her in 4 months. Both the neurologist and 3 neurosurgeons we have seen all have said that Lexi will have to have brain surgery by the time she is 3 (within the next 18 months). However, we really need to work on getting her bigger to help her chances with a successful recovery. The neurologist said that, in rare occasion, they have seen chiaris get a little better- so we're just going to hope and pray for another little miracle with Miss Lexi Mae.
While we are very glad that Lexi's surgery is able to be postponed for the time being, we were a little disappointed by our trip to the feeding clinic. I was really hoping for the 20 lb mark so we can finally get Lexi in a forward-facing "big girl" car seat. However, Lexi didn't gain weight- she LOST weight in the last 5 weeks! She is 19lbs 1.5 oz at 18 months old. So, we are now going to keep a food journal of absolutely everything Lexi takes- from 5 sips of juice to her tube feeds. We're hoping this will help make a difference next month when we see the feeding clinic again.
Please pray for:
Energy-between doctors and therapists, Lexi has 9 appointments this week! Pray for all my various family members watching the twins while I run Lexi all over the state.
Pray for Lexi's chiari (pronounced kee-ar-ee). Pray that, in 4 months, the doctors will see less of a herniation and we can continue to postpone brain surgery. Please also pray that Jon and I will have a peace about postponing surgery and that we won't constantly be second-guessing ourselves.
Pray for Lexi's weight gain. We have had a baby for the last 18 months. We are ready for a toddler! Pray for a lot of weight gain AND a lot of developmental improvements this next month!
Thank you so much for your continued prayers and support! We go back to Cleveland on May 17th so we will try to update after her next round of appointments!
We were able to see Lexi's neurologist, Dr. Friedman, who has seen Lexi from the very beginning on her issues following heart surgery. He has been working directly with a separate neurosurgeon from Rainbow Babies in Cleveland in regards to Lexi. Dr Friedman agrees that we can (and should) at this point, postpone Lexi's chiari brain surgery. Developmentally, Lexi has really taken off the last month or so. Lexi is starting to babble, get on her hands and knees and is even starting to pull herself up to stand. Her developmental pediatrician would really hate to see us interrupt her developmental upswing with brain surgery. However, due to the size of her brain stem herniation, we will have to keep a close eye on her, do our best to ensure she receives no injuries to her head, and then re-evaluate her in 4 months. Both the neurologist and 3 neurosurgeons we have seen all have said that Lexi will have to have brain surgery by the time she is 3 (within the next 18 months). However, we really need to work on getting her bigger to help her chances with a successful recovery. The neurologist said that, in rare occasion, they have seen chiaris get a little better- so we're just going to hope and pray for another little miracle with Miss Lexi Mae.
While we are very glad that Lexi's surgery is able to be postponed for the time being, we were a little disappointed by our trip to the feeding clinic. I was really hoping for the 20 lb mark so we can finally get Lexi in a forward-facing "big girl" car seat. However, Lexi didn't gain weight- she LOST weight in the last 5 weeks! She is 19lbs 1.5 oz at 18 months old. So, we are now going to keep a food journal of absolutely everything Lexi takes- from 5 sips of juice to her tube feeds. We're hoping this will help make a difference next month when we see the feeding clinic again.
Please pray for:
Energy-between doctors and therapists, Lexi has 9 appointments this week! Pray for all my various family members watching the twins while I run Lexi all over the state.
Pray for Lexi's chiari (pronounced kee-ar-ee). Pray that, in 4 months, the doctors will see less of a herniation and we can continue to postpone brain surgery. Please also pray that Jon and I will have a peace about postponing surgery and that we won't constantly be second-guessing ourselves.
Pray for Lexi's weight gain. We have had a baby for the last 18 months. We are ready for a toddler! Pray for a lot of weight gain AND a lot of developmental improvements this next month!
Thank you so much for your continued prayers and support! We go back to Cleveland on May 17th so we will try to update after her next round of appointments!
Wednesday, April 21, 2010
Wednesday, April 21st- How many "opinions" can you have?
Many have been asking how things are going with Lexi and what the nuerosurgeon from Toledo said on Friday. And so- it's time for an update!
We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.
We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)
Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.
We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!
We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.
We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)
Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.
We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!
Wednesday, April 7, 2010
April 7-More opinions and more surgery
Lexi was released from the hospital on March 18th. She was in for 4 days total. She has been on breathing treatments 1-2 times a day since she has been home. We will continue these through the end of RSV season, which will be the end of April. The doctors also said that with her "compromised lungs" she will most likely need breathing treatments any time she even gets a cold for the next year! I didn't realize RSV and pneumonia can have such a lasting effect!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
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