Today we are thankful for the little giggles that fill our home with joy. We are thankful that we are all healthy and happy. We have a turkey in the oven and a roof over our heads. We have children scattered everywhere and are feeling very blessed.
This past year has taught us so much about what we have to be thankful for. It doesn't have to be the big things, there are little things every day that so many people overlook. A year ago we were struggling with the Croup and Madilyn couldn't even hold her head up. This year we are healthy and she's giggling, chattering and motoring all over in her walker and on the floor.
Our community has shown us more love and support than we know what to do with. It's overwhelming at times. The financial gifts, the toys and clothes for Madilyn all mean more to us than my words could ever say. My sisters who have taken time from work to travel with me and sit in emergency rooms, to celebrate the little things and sometimes to just listen to me and let me cry, without them I don't know where I'd be.
My husband for always loving and supporting every crazy idea I have and every rant I go on. My children for being so tolerant and accepting all the changes that life has brought us in the past year. My parents and in-laws even though they are far away for always checking in with us and helping in any way they can.
Madilyn's teams (all 8 of them) of nurses and doctor's that take incredible care of her and us. They are always willing to go out of their way to help us in any way they can. To the nurses and teams of doctors on W-11 at Children's Hospital for being so amazing during two scary hospital stays this past year..(we love you but hopefully won't see you this next year...)
I am also incredibly thankful for each and every one of you that takes the time to read this blog. For the moment in time that you take to share in our lives and to learn about the things we live with every single day.
We are thankful for old friends and new and for our therapists that have become like family to us.
Most of all I am thankful that the sun is shining, the Peanugga is smiling and we have little pink shoes...it's all about the shoes..:)
HAPPY THANKSGIVING!!!
Thursday, November 28, 2013
Wednesday, November 13, 2013
Amazing and heartbreaking all in one trip
We just got back from trip #10 to see the Milwaukee docs yesterday. I went into this round of appointments with complete apprehension about meeting the Renal Specialist. We found out last month that Madilyn has deformed kidneys with two collecting duct systems. The good news is that even though they have the deformity they are functioning fine and since she has never had a UTI or unexplained fever they are not concerned at all. They told us that they only need to see her if she has more than three UTI's in one year or multiple unexplained fevers. They also told us that typically if the extra collecting duct system was going to cause a problem it would've already done so. I am thankful that it hasn't and they say it probably never will.
Madilyn was seen by Radiology for the first changing of her g/j tube. She did very well with this as she had not yet woken up from the anesthesia from her eye exam so she didn't even know they did it!
Now for the eyes...Madilyn has Retinopathy of Prematurity (ROP) which has caused complete retinal detachment in her left eye leaving her blind when she was around 3 months old. She had laser surgery while still in the NICU to try and correct it but it failed. The retina in her right eye started to detach so they placed a Scleral Buckle around it when she was 4 months old in hopes it would not detach further. This worked great at the time and when she was 11 months old they snipped the Scleral Buckle so her eye could grow normally and she's done amazing since then. Until this appointment...she once again has a fluid pocket behind the right eye. Her doctor was very upset about it as there is absolutely nothing he can do to remove it without further impairing her vision. He said "at this very moment it is not threatening her vision" but there is the very real possibility that we could get up one morning to discover that she is completely blind.
We were set to see him every six months for the eye exams but with this setback we are back to every two months. In January when he sees her again there is the possibility of placing another Scleral Buckle depending on what he finds. In the meantime, we pray. We pray that she keeps her sight. We pray that if she doesn't keep her sight that it is painless (I have no idea what it feels like to have a retina detach and it terrifies me that it will hurt her). We pray...for understanding...for patience....for the unknown as our life is full of the unknown.
The one thing I know for sure is that Madilyn is happy and absolutely thriving with or without vision and she loves her new fuzzy pink slippers..
Madilyn was seen by Radiology for the first changing of her g/j tube. She did very well with this as she had not yet woken up from the anesthesia from her eye exam so she didn't even know they did it!
Now for the eyes...Madilyn has Retinopathy of Prematurity (ROP) which has caused complete retinal detachment in her left eye leaving her blind when she was around 3 months old. She had laser surgery while still in the NICU to try and correct it but it failed. The retina in her right eye started to detach so they placed a Scleral Buckle around it when she was 4 months old in hopes it would not detach further. This worked great at the time and when she was 11 months old they snipped the Scleral Buckle so her eye could grow normally and she's done amazing since then. Until this appointment...she once again has a fluid pocket behind the right eye. Her doctor was very upset about it as there is absolutely nothing he can do to remove it without further impairing her vision. He said "at this very moment it is not threatening her vision" but there is the very real possibility that we could get up one morning to discover that she is completely blind.
We were set to see him every six months for the eye exams but with this setback we are back to every two months. In January when he sees her again there is the possibility of placing another Scleral Buckle depending on what he finds. In the meantime, we pray. We pray that she keeps her sight. We pray that if she doesn't keep her sight that it is painless (I have no idea what it feels like to have a retina detach and it terrifies me that it will hurt her). We pray...for understanding...for patience....for the unknown as our life is full of the unknown.
The one thing I know for sure is that Madilyn is happy and absolutely thriving with or without vision and she loves her new fuzzy pink slippers..
Saturday, November 2, 2013
Therapy progress and setbacks
So everyone knows our whole life is about three steps forward and one step back. Madilyn has earned herself a two week break from one of her physical therapists because she has been so uncooperative. This was very upsetting to me personally but it has also taught me a valuable lesson. Everyone needs a break sometimes to breathe and reset. With Madilyn we are constantly pushing and encouraging and using every moment we can as a teaching moment. She has therapists/home visitors 3 days every week and 5 days every other week, this is not including medical appointments. I think her outright rebellion was her way of telling us enough already.
I took the break reluctantly and even eased off at home and just let a few days be lazy (for lack of a better word). If she didn't want to put the blocks in the bucket or play at the music table I didn't make her. I didn't make her do "just one more" before letting her scoot around the floor like she loves, and I didn't try sticking food in her face praying she would finally eat something every time she turned around. This was a very difficult thing for me to do, but it paid off!!
She has suddenly, after six months of trying and encouraging, decided to go forward in her walker and when she hangs on to our fingers and pulls herself to standing she has started taking a few steps!!! I can also put her in her highchair and put food on the tray and she's starting to put it in her mouth. She is actually taking bites all on her own of the cheese puffs!! I'm so excited.....she just wants to do it herself, when she's ready. She's asking to go bye-bye on days when we're home all day and talking more and more. It absolutely melts my heart and makes me cry rivers of happy tears whenever our little Peanugga does something new.
That was the three steps forward............the nasty C-Diff infection is the one step backwards. C-Diff is a highly contagious intestinal infection that was caused by the antibiotics Madilyn took at the beginning of October for a double ear infection. It causes nasty diarrhea, gas, cramping and an in general unhappy baby. It has made for some very long nights as that is when she gets her feeds (her main source of nutrition). Her j-tube feeds go directly into her infected intestines.
We are extremely thankful that after just a few days on antibiotics we have seen a complete turnaround. She is sleeping better which is making for much better days too. We are very fortunate because C-Diff can be very difficult and can lead to dehydration, hospitalization, kidney failure and sometimes it can be deadly.
If I never had to hear "that could've killed her" again I'd be a very happy grandma, unfortunately for me I don't see any time in the next few years that I won't have to hear that. Madilyn is getting stronger every day and some things aren't quite as scary as they used to be. I do seem to have the bad habit of taking my moment of meltdown with each new infection or setback and then I brush myself off, take a deep breath, pick my positive thing to focus on and keep going....
I took the break reluctantly and even eased off at home and just let a few days be lazy (for lack of a better word). If she didn't want to put the blocks in the bucket or play at the music table I didn't make her. I didn't make her do "just one more" before letting her scoot around the floor like she loves, and I didn't try sticking food in her face praying she would finally eat something every time she turned around. This was a very difficult thing for me to do, but it paid off!!
She has suddenly, after six months of trying and encouraging, decided to go forward in her walker and when she hangs on to our fingers and pulls herself to standing she has started taking a few steps!!! I can also put her in her highchair and put food on the tray and she's starting to put it in her mouth. She is actually taking bites all on her own of the cheese puffs!! I'm so excited.....she just wants to do it herself, when she's ready. She's asking to go bye-bye on days when we're home all day and talking more and more. It absolutely melts my heart and makes me cry rivers of happy tears whenever our little Peanugga does something new.
That was the three steps forward............the nasty C-Diff infection is the one step backwards. C-Diff is a highly contagious intestinal infection that was caused by the antibiotics Madilyn took at the beginning of October for a double ear infection. It causes nasty diarrhea, gas, cramping and an in general unhappy baby. It has made for some very long nights as that is when she gets her feeds (her main source of nutrition). Her j-tube feeds go directly into her infected intestines.
We are extremely thankful that after just a few days on antibiotics we have seen a complete turnaround. She is sleeping better which is making for much better days too. We are very fortunate because C-Diff can be very difficult and can lead to dehydration, hospitalization, kidney failure and sometimes it can be deadly.
If I never had to hear "that could've killed her" again I'd be a very happy grandma, unfortunately for me I don't see any time in the next few years that I won't have to hear that. Madilyn is getting stronger every day and some things aren't quite as scary as they used to be. I do seem to have the bad habit of taking my moment of meltdown with each new infection or setback and then I brush myself off, take a deep breath, pick my positive thing to focus on and keep going....
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