So there's lots of news on both fronts for the girls and medical updates.
1. Cailyn had her latest endoscopy and she's all clear. No more white blood cells in her esophagus, both by looking at it and more importantly with the biopsies. So we had a few options and I've decided we are going to do nothing. We took her off the steroids. We are still not feeding her milk, egg and soy and in 6 months we'll do another endoscopy to see if the bad stuff has returned.
2. Cailyn had her 4 year old physical last week and she's doing well. She's up to 36 lbs and 8 oz, 50th percentile and she's 41.5 inches, which is 75-90th percentile. We got a lot of help from her pediatrician with paperwork and applications to get back to aquatic therapy and start horseback riding in April. Then she had 3 booster vaccines and had a mega-allergic reaction. Ends up both MMR and Chickenpox are grown in chicken eggs. Cailyn's armpits, neck and ears were all red and hot, then she had a ring around her belly. A dose of benadryl and she was better but yucky--poor girl.
3. Yesterday we got confirmation that Miranda is negative for the genetic anomaly that has so wreaked havoc on Cailyn's body and life. So hopefully there are NO seizures in Miranda's future and all is good. She's been growing and eating really well. She's over 10 pounds now at 5 weeks old and she's just too cute. Her facial expressions are wonderful. It's very different and everything Miranda does with ease, just makes me feel for Cailyn. She struggles daily to just do the things that come so naturally to typical kids, especially getting your brain and muscles to work together.
Tuesday, March 13, 2012
Sunday, March 11, 2012
Girls Day Trip to Gettysburg
Cailyn, Miranda, Aunt Danielle and I took a road trip yesterday to Gettysburg PA. It's only about a 90 minute drive. It was a beautifully sunny day but it was chilly. I knew the big part of the visit was an auto tour so that seemed like it would work with both girls. We bought a CD in the gift shop that described all the stops on the tour and gave you the historical story too.
We opted for the concise tour and should have gotten the dramatic tour. The concise tour was BORING and confusing. Sometimes he talked in between stops and I kept zoning out and not listening to him.
The girls did well. A few times Miranda got angry but if you popped the pacifier back in she was happy.
At the cemetary
We only got pics of Miranda in the carrier because it was cold so I included one of her in her carseat so she made an appearance.
We kept Cailyn pretty well bundled up as well.
Aunt Danielle borrowed Cailyn's "magic" pink mittens. They kinda fit.
We opted for the concise tour and should have gotten the dramatic tour. The concise tour was BORING and confusing. Sometimes he talked in between stops and I kept zoning out and not listening to him.
The girls did well. A few times Miranda got angry but if you popped the pacifier back in she was happy.
At the cemetary
We only got pics of Miranda in the carrier because it was cold so I included one of her in her carseat so she made an appearance.
We kept Cailyn pretty well bundled up as well.Aunt Danielle borrowed Cailyn's "magic" pink mittens. They kinda fit.
Friday, March 2, 2012
Cailyn Medical Update
So on Wednesday Cailyn had her 3rd endoscopy to see if her infection/allergic reaction to food has cleared up and her esophagus is free of white blood cells. Good News--it's all clear and looks like a healthy esophagus. Also good news we were able to stop the steroids today, which were supposed to help the food allergies but we believe have been the culprit behind her severe increase in seizures. We have a followup appointment at clinic on the 12th and we'll get the biopsy results and discuss next steps.
We also took Cailyn to the best playground around this week and she got to ride "her swing".
She's gotten so big. This picture is from one of her first times on "her swing" in 2009. Not sure why she likes to cross that leg and bring it up on the swing.
This is a great new swing they have. You put her wheelchair right on it and it locks in place. I think she might like this swing the best because she's sitting so comfortably and not so slumped like in the other swings. It's pretty cool. We got our own key for the swing so we can use it whenever we head over to the park.
We also took Cailyn to the best playground around this week and she got to ride "her swing".
Today I Am One Month Old
How fast time flies. Can't believe it's 1 month ago already that Lil' Miranda Rose joined our Family.
She's not so little any more. She's gained more than a pound and a half in a month. She started at 8 lbs 1 oz and is now 9 lbs 12 oz. She's eating and sleeping well. She has gone a few 6 hour stints of sleeping overnight, from 12:30-6:30, which makes Mommy happy.
She's not so little any more. She's gained more than a pound and a half in a month. She started at 8 lbs 1 oz and is now 9 lbs 12 oz. She's eating and sleeping well. She has gone a few 6 hour stints of sleeping overnight, from 12:30-6:30, which makes Mommy happy.
Monday, February 27, 2012
Medical Updates
Last Tuesday we went to see Cailyn's neurologist. We haven't seen him since the summer. Her seizures have been real bad lately and she's been unable to participate and stay awake in school much. So we have to try to find answers and help her out. Ends up, her stupid steroid she's been on for the food allergies, is known as possibly increasing seizures. UGH so annoying. I thought I asked the right questions when asking if this medicine would be ok but apparently I have to blatantly say "WILL THIS INCREASE HER SEIZURES?"
So the new plan is on Wednesday, after she has her next endoscopy to check on the EOE/food allergies we will most likely stop the steroid, then we'll have two weeks to see how her seizures are. If they improve we stick with what we've got now, medicine wise, if they don't improve then we add in a third seizure med. Fingers crossed we return to pre-November levels on seizures. She was REALLY good from May-Thanksgiving.
On another note, things are going well with Miranda. Good thing those Lupo/Reese genes make for good sleepers. At 3 weeks old she's sleeping 5-6 hours overnight and making Momma happy.
So the new plan is on Wednesday, after she has her next endoscopy to check on the EOE/food allergies we will most likely stop the steroid, then we'll have two weeks to see how her seizures are. If they improve we stick with what we've got now, medicine wise, if they don't improve then we add in a third seizure med. Fingers crossed we return to pre-November levels on seizures. She was REALLY good from May-Thanksgiving.
On another note, things are going well with Miranda. Good thing those Lupo/Reese genes make for good sleepers. At 3 weeks old she's sleeping 5-6 hours overnight and making Momma happy.
Thursday, February 16, 2012
Cailyn's 4th Birthday
Four years ago you joined our Family and made us so happy.
Everyday you face amazing challenges, but you are my hero.
Cailyn Juliette, our special little girl.
Feb. 15, 2008
Everyday you face amazing challenges, but you are my hero.
Cailyn Juliette, our special little girl.
Feb. 15, 2008
Happy Birthday Big Sister, Love Miranda
Our Family joined by Aunt DanielleTuesday, February 14, 2012
Friday, February 10, 2012
An email from Grandpa
So my Dad sent along this email with some photos of our new girl Miranda the other day. I thought it was quite funny. Not sure the nickname will stick.
My mother named me Robert, but I have always answered to and become known as Bob, along with several less flattering nicknames.
I always knew when I was in trouble because instead of Bob I became Robbertt......
I believe that when Dolores was a child some of her sisters could not pronounce her name so she became Dolo.
My sister Marilyn has become Aunt Mar.
While growing up our children were given several nicknames, when Dolores went to yell at or to one of the girls it usually came out JaDan.
Frank was referred to as The Boy, as in what did The Boy do now or where is The Boy now, until his preference for pasta changed that to Franko.
Frank's wife Jen is known as Peanut to her friends.
Danielle became Danno.
As they went off to school friends pinned several other nicknames on them, most ended up being just Lupo, also known on email as Loopoh.
Dolores and I sometimes just refer to them as Numbers 1,2 or 3.
Several nieces & nephews also have nicknames, Donnie is usually just known as DP.
While even as she has become a young lady and grown in size we still have Little Charlotte aka Chuckie.
Mathew is Mattie, Kevin is Kev and there are several others.
Grandchildren have nicknames.
I know Jen and Curt spent a lot of time and energy in coming up with the lovely name Miranda ( do you understand your rights as they have been explained to you) Rose Reese,
Lets take a look at the child's birth date, no I'm not going to call her Groundhog.
As Danno points out on her blog Miranda was born on 2/2/2012.
As a csection birth the date and time was pretty well planned, not like her mother who decided to pop out a few weeks early, but was still kept waiting by the Doctor as several relatives sat at a baby shower waiting for the guest of honor, the Doctor was waiting for the Mets game to end before he delivered Jennifer.
Back to Miranda born on 2/2/2012 that's four deuce's or with deuce's wild five of a kind in poker.
Miranda may become a wild child somewhere down the line or a professional poker player, but for now I am going to start calling her Deuce.
Say hello to the Little Deuce when you meet her.
Attached is a picture of Grandma with Miss K and Little Deuce.
Parents spend a lot of time and energy deciding on names for our children, yet for whatever reason we tend to pick up nicknames as life goes by.
My mother named me Robert, but I have always answered to and become known as Bob, along with several less flattering nicknames.
I always knew when I was in trouble because instead of Bob I became Robbertt......
I believe that when Dolores was a child some of her sisters could not pronounce her name so she became Dolo.
My sister Marilyn has become Aunt Mar.
We also have Aunts Char, Bern and Re.
While growing up our children were given several nicknames, when Dolores went to yell at or to one of the girls it usually came out JaDan.
Frank was referred to as The Boy, as in what did The Boy do now or where is The Boy now, until his preference for pasta changed that to Franko.
Frank's wife Jen is known as Peanut to her friends.
Danielle became Danno.
As they went off to school friends pinned several other nicknames on them, most ended up being just Lupo, also known on email as Loopoh.
Dolores and I sometimes just refer to them as Numbers 1,2 or 3.
Several nieces & nephews also have nicknames, Donnie is usually just known as DP.
While even as she has become a young lady and grown in size we still have Little Charlotte aka Chuckie.
Mathew is Mattie, Kevin is Kev and there are several others.
Grandchildren have nicknames.
We have Mattie, Cailyn is Miss K or KK, sometimes Tasman will introduce himself as Thomas to strangers.
I know Jen and Curt spent a lot of time and energy in coming up with the lovely name Miranda ( do you understand your rights as they have been explained to you) Rose Reese,
and I have heard rumors of potential nicknames, Mira or Randy, but sometimes fate steps in.
Lets take a look at the child's birth date, no I'm not going to call her Groundhog.
As Danno points out on her blog Miranda was born on 2/2/2012.
As a csection birth the date and time was pretty well planned, not like her mother who decided to pop out a few weeks early, but was still kept waiting by the Doctor as several relatives sat at a baby shower waiting for the guest of honor, the Doctor was waiting for the Mets game to end before he delivered Jennifer.
Back to Miranda born on 2/2/2012 that's four deuce's or with deuce's wild five of a kind in poker.
Miranda may become a wild child somewhere down the line or a professional poker player, but for now I am going to start calling her Deuce.
Say hello to the Little Deuce when you meet her.
Attached is a picture of Grandma with Miss K and Little Deuce.
Monday, February 6, 2012
Miranda Rose Reese 02-02-12 -- 12:01 pm 8 lbs 1oz
Big Sister, Little Sister
Cailyn Juliette and Miranda Rose
Daddy's Girl
Going Home
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