I really can't believe it's March! Growing up, time lasted forever, and now that I am getting older and have a family of my own, it races by.
The race is in 3 weeks and I am so excited!! What a wonderful thing this is going to be. Isabella has so many gifts to give and has touched so many lives. I feel so blessed these days to have her as my daughter. The lessons she has taught me and our family cannot be bought and I will always be grateful for the opportunity to learn them.
We are gearing up for the Princesses' FIRST birthday! Oh my goodness!! A few months ago Matt and I thought she wouldn't make it, and here she is happy and sassy! Naturally it's going to be a blowout party. I'm pulling out all the stops. I ordered her cake from a bakery in the city called Ruthe's Sweet Justice (if you haven't had their stuff, your crazy!), and they are making her a giant pink castle cake....complete with a blond princess on top!! The theme is PINK (do other colors even exist anymore???) and I really cannot wait. This is going to be a total celebration of her life and the year behind us.
Although there is some sadness to her turning one. The things she can not and will not do. The fact that with each passing year, we are more than likely closer to losing her. Many things to think about, but for me the most important thing is be positive and embrace the things we do have in Isabella. Sure, she does not walk or talk, but she LOVES us and needs us and is a real member of our family. She is still so sweet like a newborn (a 26lb newborn!!), and loves to be held and cuddled. There is something so special in that.......
I hope you all can make it to the run/walk on March 24th. Remember, just go to www.runningforbella.org to register. It's going to be an amazing day!!! :)
Friday, March 2, 2007
Wednesday, January 10, 2007
A real whopper!
Oh my goodness! Isabella had her 9 month check-up recently and much to our surprise our "little" princess weighs 24 pounds!! Holy Moly! :) I am just so happy to see her so fat and sassy!! She has just been a happy fat clam these days, her eyes smile all the time. All I have to do is say her name and she twinkles and wiggles her fat legs.
For those of you that do not know, Isabella use to be a little scrawny and was not gaining weight well, mostly because she was not eating well. Not anymore! Now her weight is in the 100th percentile! Sheesh! Bigger than my healthy 2 year old! Needless to say I have cut back on her rice in the bottle and I am feeding her every 4 hours instead of every 3 and so far so good! Plus she is eating baby foods like there is no tomorrow. Her oral skills are amazing these days. I tell you, God and Isabella surprise me every single day. We've heard a lot of "she'll never" and she is proving us wrong, what a fighter! Of course, every night before I put her to bed I whisper to her "keep fighting sissy, ok?" :) I really think she hears me.......
We are really gearing up for the run in March. We have settled on a route now which is very exciting. I have decided to walk the 5k instead of run so that I can push Isabella along in the stroller (or hopefully her new wheelchair if we can get insurance to cooperate!). I really want her to participate. She loves getting out and about these days, which is so nice!!
The other day I took her and Jackson to the library and she did wonderful! Even ate some bananas while we were there. She responds so well to other kids/babies. She is really starting to look for voices and make eye contact with others (instead of just me). Everyone is really tickled when she looks at them or for them in a room...especially daddy! Isabella and Matt have really bonded the last couple of months, she responds so well to him. I think his shoulder is her favorite sleeping spot in the house! ;)
Overall she is just a regular member of the house, the days are very comfortable now. I think we have finally settled into this life and it feels so nice :)
For those of you that do not know, Isabella use to be a little scrawny and was not gaining weight well, mostly because she was not eating well. Not anymore! Now her weight is in the 100th percentile! Sheesh! Bigger than my healthy 2 year old! Needless to say I have cut back on her rice in the bottle and I am feeding her every 4 hours instead of every 3 and so far so good! Plus she is eating baby foods like there is no tomorrow. Her oral skills are amazing these days. I tell you, God and Isabella surprise me every single day. We've heard a lot of "she'll never" and she is proving us wrong, what a fighter! Of course, every night before I put her to bed I whisper to her "keep fighting sissy, ok?" :) I really think she hears me.......
We are really gearing up for the run in March. We have settled on a route now which is very exciting. I have decided to walk the 5k instead of run so that I can push Isabella along in the stroller (or hopefully her new wheelchair if we can get insurance to cooperate!). I really want her to participate. She loves getting out and about these days, which is so nice!!
The other day I took her and Jackson to the library and she did wonderful! Even ate some bananas while we were there. She responds so well to other kids/babies. She is really starting to look for voices and make eye contact with others (instead of just me). Everyone is really tickled when she looks at them or for them in a room...especially daddy! Isabella and Matt have really bonded the last couple of months, she responds so well to him. I think his shoulder is her favorite sleeping spot in the house! ;)
Overall she is just a regular member of the house, the days are very comfortable now. I think we have finally settled into this life and it feels so nice :)
Friday, December 29, 2006
A wonderful Christmas!
What a busy time! I swear there was about two seconds between Thanksgiving and Christmas this year!! We had such a great time, Jackson really "got it" this year. Of course, mommy worked serious over-time pounding it into him :) I just love everything about the Holidays and wish I was still a kid to enjoy it that much more! So now I get to live vicariously through the kiddos and I love it!
Isabella did great just like she did through Thanksgiving. I think her new tactic for stressful situations is to just fall asleep. She slept through Christmas Day entirely :) That girl knows when she is home though, as soon as we walked through the door she was Miss Bright Eyes!
Seizures are doing FANTASTIC these days. She is on a new drug called Vigabatrin that we get from Canada because it is not FDA approved here. She now only has a few tiny clusters every few days. We'll take it! Now that she is off the ACTH we are starting to see our "old" Isabella again. She is starting to reach a little and will hold onto small objects (if I can get her fist uncurled that is!) for a few seconds. She has been seeing very well these days. I definitely think there is a connection between how good she is doing and whether or not she is seeing well.
Her feedings are starting to struggle a lit bit again. We are kind of holding our breath around here. She is still taking the bottle, but is forgetting how to suck and it takes her a few minutes to figure it out. She always does though! (Mommy is *very* persistent) Also she is beginning to be bothered by noise and distraction again while eating. This is tough, because Jackson is NOT quiet :) She seems ok here at the house with familiar noises, but feeding away from the house is a no-go again. I am thankful for the FOUR months we had though with her eating like a normal baby anywhere I took her. How nice for a change! Not having to stress about getting home so she can eat in quiet!! We have had some great months though and knew this would probably happen again. (although I prayed it wouldn't!)
There is not much else to tell, so far so good these days! Isabella is approaching her first birthday, ack! I cannot believe it! Of course I am already planning. It will be an event to remember, you can count on that!! ;)
Oh, the photos at the top were recently taken by a photographer named Carrie who volunteers through the Hospice we are with. She is fantastic and did such a great job capturing our family at home :) Thanks so much again Carrie!!! Go to her website at www.clcportraits.com
Hope everyone had a wonderful Holiday!!
Sunday, November 26, 2006
Happy Holidays!!
Whew! Thanksgiving is over and we had such a great weekend seeing everyone. Boy oh boy am I glad it's over though! Isabella did wonderful the entire weekend, she is such a trooper. It was a busy 4 day weekend and Isabella was a happy clam the entire 4 days!! Sometimes I just marvel at how well she learns and adapts with what she has.....something for all of us to think about for sure. ;)
Last week we started therapy with her new Occupational Therapist and she is the BEST! I am so excited! We are ordering all kinds of neat equipment for Isabella that will really help her join the family and be more comfortable. Soonerstart is loaning us something called a tumble forms feeder seat that is just plain awesome. It looks so uncomfortable to Matt and I, but Isabella really likes it. In fact she falls asleep in it almost everytime she is in it! :) It's great for feeding her and also just great for her to sit in, it really helps her to sit almost upright...what a new world for her! We are also ordering something called a kidcart for her since she has almost outgrown her infant seat. Her therapist mentioned that some moms don't want a kidcart because it makes their childs disablity really obvious in public. Clearly I do not have that issue, although I don't really look forward to the stares we'll get, I know they are normal and I would glance too. The kidcart is a stroller just for kids like her. She will get to sit upright when I take her and Jackson places instead of laying flat on her back. I cannot wait to get it!!!
Ugh, we are battling seizures again. I know, I know, it seems like were always battling those nasty things. We thought the ACTH she has been on was going to work, but no. Now her Infantile Spasms are getting worse and worse, plus she's starting a new seizure type that I don't know anything about (uh oh time for more research!) ;) So, if you get a chance, pray or whatever it is that you do, that her seizures S T O P!
Well, I hope everyone had a fantastic Thanksgiving and has a wonderful Holiday season! I love this time of year and I know we all have so much to be thankful for :) One of the many, many lessons I have learned throughout this process is to cherish what you have today, right now. Things change in an instant and you never see it coming. We all have something to be happy about, so let go of the negativity!!!! You have no use for it and neither do those around you :)
Love,
M.
Last week we started therapy with her new Occupational Therapist and she is the BEST! I am so excited! We are ordering all kinds of neat equipment for Isabella that will really help her join the family and be more comfortable. Soonerstart is loaning us something called a tumble forms feeder seat that is just plain awesome. It looks so uncomfortable to Matt and I, but Isabella really likes it. In fact she falls asleep in it almost everytime she is in it! :) It's great for feeding her and also just great for her to sit in, it really helps her to sit almost upright...what a new world for her! We are also ordering something called a kidcart for her since she has almost outgrown her infant seat. Her therapist mentioned that some moms don't want a kidcart because it makes their childs disablity really obvious in public. Clearly I do not have that issue, although I don't really look forward to the stares we'll get, I know they are normal and I would glance too. The kidcart is a stroller just for kids like her. She will get to sit upright when I take her and Jackson places instead of laying flat on her back. I cannot wait to get it!!!
Ugh, we are battling seizures again. I know, I know, it seems like were always battling those nasty things. We thought the ACTH she has been on was going to work, but no. Now her Infantile Spasms are getting worse and worse, plus she's starting a new seizure type that I don't know anything about (uh oh time for more research!) ;) So, if you get a chance, pray or whatever it is that you do, that her seizures S T O P!
Well, I hope everyone had a fantastic Thanksgiving and has a wonderful Holiday season! I love this time of year and I know we all have so much to be thankful for :) One of the many, many lessons I have learned throughout this process is to cherish what you have today, right now. Things change in an instant and you never see it coming. We all have something to be happy about, so let go of the negativity!!!! You have no use for it and neither do those around you :)
Love,
M.
Wednesday, November 15, 2006
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A Princess from the start
I guess I should start by saying "Hi". I'm Michelle, mommy to sweet Isabella who is almost 8 months now and my wild man Jackson who is almost 2 1/2. Wow these kids keep me busy!!
If you are reading this, I hope that means you are interested in the "Running for Bella" campaign that my incredible friend Allison is organizing. I am so excited for this run and the opportunity to create awareness not just for my daughters disorder Lissencephaly, but for neurological defects in general. This has been a whole new world for myself and my family, some parts good and some parts bad. I guess I'm writing so that you can get a glimpse into our life with a real life Princess :)
Well, a quick synopsis of the beginning of our new world. I had a normal uncomplicated pregnancy with Isabella with a fantastic delivery. We came home and did the normal newborn thing, everything was going fine. Around six weeks I woke up in the middle of the night inexplicably and looked at Isabella in her co-sleeper. She was having a seizure....or at least what looked like one to me. We took her to the ER, had a CT and got the worst news possible. Something called Lissencephaly. It took many days for this to sink in. I had never heard of it. All I really heard from the Doctor was "developmentally delayed" and that is all I needed to know. You just don't see something like this coming. I mean, it just doesn't happen to people like us, right?
The following days and weeks are so blurry to me now. A lot of chaos and emotional turmoil is about all I really remember. Thank goodness for auto pilot mode!! ;) We had tests and lots of appointments. We continued to get more and more bad news. My world seemed very surreal, like I was not really in it, just watching I guess. In the days after I researched and researched and researched until I couldn't read anymore about this disorder. In my research I discovered that most of the information available was written by a Dr. William Dobyns in Chicago. So I became focused on seeing this Doctor! Long story short, I weasled my way in there before she was 3 months old and met with the world expert! He told us even more bad news unfortunately. Isabella has Isolated Lissencephaly Sequence (ILS) and is a grade 1, which is the worst. So not only does she have a rare brain disorder, she has the worst he had seen. Dr. Dobyns did give us some great information and insight. He also gave us hope. He conducted a FISH test on Isabella's chormosomes trying to find out why she got this. Was it random? Was it from us? The test took WEEKS and I agonized every.single.day over the results. Finally the day came when I got THE phone call from Dr. Dobyns genetic counselor. The results showed a mutation (in the genetics world this is fantastic news) they gave us a 0% chance of reoccurance. Finally some good news for us and our family. :)
Some of you I'm sure are wondering what her prognosis is, and what issues we have with her. Basically she will function at a 1-3 month old level for the rest of her life. At 8 months she functions at about a one-two month level. She does not have head control, she cannot sit up, roll over, reach or grab objects. She also has neurological vision impairment which basically means she can see, but her brain doesn't process it. She does suffer from seizures on a daily basis. We had good control for about 5 months, and we seem to be losing ground right now. In the past we have really struggled with her feeding. Her brain seems to switch on and off. For now she is doing GREAT and even eating baby foods (she loves bananas best!) :)
Now about Isabella and NOT Lissencephaly. :) She is an absolute beauty (if I do say so myself), she has the longest eyelashes you will ever see. She loves her mommy (of course!), loves to take showers, enjoys music and me singing to her. She likes to "read" books and sit in her swing and watch her fishies spin. Big brother really gets her attention and makes her cry sometimes too :) She's a huge talker and will coo all day long if she's in the mood. Oh, and let me tell you, she is a drama queen like no other. She can make pout faces that will tear you to pieces. :) A true Princess, she loves pink, her whole room is a pink with a splash of pink. I make her tutu's and bows and I think she likes them :) Basically she is spoiled rotten, as she should be.
I will post more and try to keep everyone who reads this updated as much as I can. I cannot tell you how excited I am about this run. I think it is going to be incredibly special and we will make it FUN which is most important. :) It's November so if you haven't started training you better get started!!! See you there!
If you are reading this, I hope that means you are interested in the "Running for Bella" campaign that my incredible friend Allison is organizing. I am so excited for this run and the opportunity to create awareness not just for my daughters disorder Lissencephaly, but for neurological defects in general. This has been a whole new world for myself and my family, some parts good and some parts bad. I guess I'm writing so that you can get a glimpse into our life with a real life Princess :)
Well, a quick synopsis of the beginning of our new world. I had a normal uncomplicated pregnancy with Isabella with a fantastic delivery. We came home and did the normal newborn thing, everything was going fine. Around six weeks I woke up in the middle of the night inexplicably and looked at Isabella in her co-sleeper. She was having a seizure....or at least what looked like one to me. We took her to the ER, had a CT and got the worst news possible. Something called Lissencephaly. It took many days for this to sink in. I had never heard of it. All I really heard from the Doctor was "developmentally delayed" and that is all I needed to know. You just don't see something like this coming. I mean, it just doesn't happen to people like us, right?
The following days and weeks are so blurry to me now. A lot of chaos and emotional turmoil is about all I really remember. Thank goodness for auto pilot mode!! ;) We had tests and lots of appointments. We continued to get more and more bad news. My world seemed very surreal, like I was not really in it, just watching I guess. In the days after I researched and researched and researched until I couldn't read anymore about this disorder. In my research I discovered that most of the information available was written by a Dr. William Dobyns in Chicago. So I became focused on seeing this Doctor! Long story short, I weasled my way in there before she was 3 months old and met with the world expert! He told us even more bad news unfortunately. Isabella has Isolated Lissencephaly Sequence (ILS) and is a grade 1, which is the worst. So not only does she have a rare brain disorder, she has the worst he had seen. Dr. Dobyns did give us some great information and insight. He also gave us hope. He conducted a FISH test on Isabella's chormosomes trying to find out why she got this. Was it random? Was it from us? The test took WEEKS and I agonized every.single.day over the results. Finally the day came when I got THE phone call from Dr. Dobyns genetic counselor. The results showed a mutation (in the genetics world this is fantastic news) they gave us a 0% chance of reoccurance. Finally some good news for us and our family. :)
Some of you I'm sure are wondering what her prognosis is, and what issues we have with her. Basically she will function at a 1-3 month old level for the rest of her life. At 8 months she functions at about a one-two month level. She does not have head control, she cannot sit up, roll over, reach or grab objects. She also has neurological vision impairment which basically means she can see, but her brain doesn't process it. She does suffer from seizures on a daily basis. We had good control for about 5 months, and we seem to be losing ground right now. In the past we have really struggled with her feeding. Her brain seems to switch on and off. For now she is doing GREAT and even eating baby foods (she loves bananas best!) :)
Now about Isabella and NOT Lissencephaly. :) She is an absolute beauty (if I do say so myself), she has the longest eyelashes you will ever see. She loves her mommy (of course!), loves to take showers, enjoys music and me singing to her. She likes to "read" books and sit in her swing and watch her fishies spin. Big brother really gets her attention and makes her cry sometimes too :) She's a huge talker and will coo all day long if she's in the mood. Oh, and let me tell you, she is a drama queen like no other. She can make pout faces that will tear you to pieces. :) A true Princess, she loves pink, her whole room is a pink with a splash of pink. I make her tutu's and bows and I think she likes them :) Basically she is spoiled rotten, as she should be.
I will post more and try to keep everyone who reads this updated as much as I can. I cannot tell you how excited I am about this run. I think it is going to be incredibly special and we will make it FUN which is most important. :) It's November so if you haven't started training you better get started!!! See you there!
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