I'd be a liar if I didn't say I'm tired...summer was not what I had hoped for and I feel like I blinked my eyes and it's fall and we're sick again. We got to enjoy one day...yes, I said one day at the beach this summer where we got to swim and enjoy family and one other day that we got to enjoy a picnic on the beach at a friend's camp. That was our summer. Madilyn doesn't tolerate the heat well so when it's above 75 degrees we are in the air conditioned house and as soon as it cools off we start enjoying daily walks and she ends up sick right away. Sick for us means breathing treatments every 4 hours with 3 different meds, steroids that have her bouncing off the walls, antibiotics that cause a whole other round of intestinal issues and puke...oh the puke...which leads to weight loss...it's a vicious circle and I'm tired...
We went to Milwaukee in July for appointments that went really well and almost exactly a month later we were air lifted to Milwaukee because Madilyn's feeding tube coiled from her intestines back up into her stomach which ended up making her really sick really quick. Feeding tolerance had not been achieved yet and now she's sick. Sometimes it feels like we'll never make feeding progress. It's the one mountain that I feel like we'll never climb successfully. Yet we keep trying, over and over and over....maybe someday we'll get there...at least I hope...I always have hope.
A life of seclusion is difficult, I feel like people sometimes forget about us. I understand why though. Why would my friends keep inviting me out when I never get to show up. I miss working, but that's not practical either with our special needs/medically complex life. My son had to get himself to college 10 hours away from home because our emergency med flight and inpatient stay made it impossible for us to get him there, physically and financially. My car needs new tires and the exhaust repaired and I have no clue where we will pull the money from. We have two trips coming up to Milwaukee in the end of September and again two weeks later. We need a specific weather cover for the stroller so we can be outside and Madilyn can be protected.........if it's not one thing it's another and there's never enough money or me to go around....but we'll figure it out, we always do.
The doctor recommended that I purchase/make signs to attach to the stroller/shopping cart etc..they are a stop sign and then a medical alert is printed on them clearly stating that we are a medically fragile child and please don't touch us.....like we don't feel secluded and alone enough now we're going to put a big red stop sign on us? I can't even begin to explain how this makes me feel....while I don't want people touching her and getting in her face I honestly don't know how I feel about the stop sign approach either.
I'm done whining...I'll have my good cry cause I'm exhausted and we'll move on and figure it out. That's what we do. We choose to focus on the positive, we have to....this virus has not landed us inpatient, we are able to be home....that's positive....and thanks to the drastic change in weather the little pink boots have been ordered.....cause our life is all about the little pink shoes..
Thursday, September 11, 2014
Tuesday, August 5, 2014
We see what we want to see
We've been quiet for a while...my son graduated from high school and we've moved to a single story home..it was a crazy chaotic few months. This past month we've just enjoyed being settled and we've been to Milwaukee for 5 days for medical appointments (again). Madilyn's appointments went great. GI is thrilled with her growth since they upped her calories. It was the first time in 11 months that we finally had to increase her calories so she'd gain weight. She's just over 23 lbs now and almost 3 years old. The retina specialist was very happy too. The fluid pocket on her right eye is still there but it's very stable at this point and is not in a vision threatening position so that's a relief! It also means they don't have to put her under anesthesia again until December to look at it.
We're enjoying our new home and the Peanugga is learning to navigate her gait trainer outside in the grass. It's fun to watch her...she so LOVES it! She has learned that the road in front of our house has a very slight hill and she'll walk/run super quick for about 5 steps and then hang on her gait trainer and coast just like papa does when he's pushing her in the shopping cart. She giggles like crazy when she does it. She sure is smart.
With all of our accomplishments have come challenges. Madilyn is sleeping in her very own bedroom since moving and that's going really well. I now sleep with the video monitor...:) When it's warm outside as much as we love to be out there she still doesn't deal well at all with the heat. The combination of allergies and just her reactions to the warm temperatures usually mean tons of fun while playing and lots of vomit, sometimes for several hours after we've been outside....nobody can tell us why...(imagine that), it's just what she does....it's frustrating. Everything we do seems to have a trade off or consequence...we just have to weigh heavily if the consequence is worth it and how much stress it'll put on Madillyn's little body. Is it worth it to spend the entire day outside with family and having fun for her to be vomiting and exhausted for hours after? Sometimes it is....sometimes it isn't...it's all a huge juggling act....I'm terrified to drop the wrong ball...
Madilyn has been making huge progress with her speech and motor skills. She's pulling to stand on all of our furniture and she's an extremely busy 2 year old that doesn't hesitate to tell us no. So just when we're starting to feel like the worst of everything is maybe behind us we deal with the news that two little Dandy-Walker sweehthearts have earned their angel wings over the past 5 weeks because of this rare, nasty disease....and it makes my heart break...one of the families we followed in a group we belong to. Both of our girls had their shunt issues at the same time....my heart breaks for them.....that could be us...I try not to let my mind go there...it terrifies me...
Then to add to it we get the phone call....the dreaded phone call stating that a medical department closer to our home won't even see Madilyn because she's way too medically complex and fragile. She scares them, they refuse. It makes me want to scream! Madilyn has multiple medical diagnosis and they are all rare...one of them so rare that she's the only one in the world....she shouldn't be alive they tell us, she shouldn't be able to do anything they tell us............but she is and she does....I want them to see what we see. I want them to meet her before they shun her and see what a happy, beautiful little girl she is. They have never met her, they think that she's a vegetable because on paper that's what they say she should be.........I hate "they"...I hate that she's stereotyped and shunned and she's not even 3.....the ones that take the time to know us love her. She's an inspiration, not something to be feared. She's a sweet, adorable, loving little person....not just a medical anomaly...and something to be gawked at.....she's so much more than just their statistic, but they don't take the time to see that.......it makes me incredibly angry and sad all at the same time.....
"They" can see what they want....and I will see what I want...we live it every single day...it is our reality...we choose to live for the positive and focus on the good things otherwise the negative will suck us in and that's a place we don't want to be. We also choose to celebrate....the little pink crocs.....cause it's all about the little pink shoes...:)
We're enjoying our new home and the Peanugga is learning to navigate her gait trainer outside in the grass. It's fun to watch her...she so LOVES it! She has learned that the road in front of our house has a very slight hill and she'll walk/run super quick for about 5 steps and then hang on her gait trainer and coast just like papa does when he's pushing her in the shopping cart. She giggles like crazy when she does it. She sure is smart.
With all of our accomplishments have come challenges. Madilyn is sleeping in her very own bedroom since moving and that's going really well. I now sleep with the video monitor...:) When it's warm outside as much as we love to be out there she still doesn't deal well at all with the heat. The combination of allergies and just her reactions to the warm temperatures usually mean tons of fun while playing and lots of vomit, sometimes for several hours after we've been outside....nobody can tell us why...(imagine that), it's just what she does....it's frustrating. Everything we do seems to have a trade off or consequence...we just have to weigh heavily if the consequence is worth it and how much stress it'll put on Madillyn's little body. Is it worth it to spend the entire day outside with family and having fun for her to be vomiting and exhausted for hours after? Sometimes it is....sometimes it isn't...it's all a huge juggling act....I'm terrified to drop the wrong ball...
Madilyn has been making huge progress with her speech and motor skills. She's pulling to stand on all of our furniture and she's an extremely busy 2 year old that doesn't hesitate to tell us no. So just when we're starting to feel like the worst of everything is maybe behind us we deal with the news that two little Dandy-Walker sweehthearts have earned their angel wings over the past 5 weeks because of this rare, nasty disease....and it makes my heart break...one of the families we followed in a group we belong to. Both of our girls had their shunt issues at the same time....my heart breaks for them.....that could be us...I try not to let my mind go there...it terrifies me...
Then to add to it we get the phone call....the dreaded phone call stating that a medical department closer to our home won't even see Madilyn because she's way too medically complex and fragile. She scares them, they refuse. It makes me want to scream! Madilyn has multiple medical diagnosis and they are all rare...one of them so rare that she's the only one in the world....she shouldn't be alive they tell us, she shouldn't be able to do anything they tell us............but she is and she does....I want them to see what we see. I want them to meet her before they shun her and see what a happy, beautiful little girl she is. They have never met her, they think that she's a vegetable because on paper that's what they say she should be.........I hate "they"...I hate that she's stereotyped and shunned and she's not even 3.....the ones that take the time to know us love her. She's an inspiration, not something to be feared. She's a sweet, adorable, loving little person....not just a medical anomaly...and something to be gawked at.....she's so much more than just their statistic, but they don't take the time to see that.......it makes me incredibly angry and sad all at the same time.....
"They" can see what they want....and I will see what I want...we live it every single day...it is our reality...we choose to live for the positive and focus on the good things otherwise the negative will suck us in and that's a place we don't want to be. We also choose to celebrate....the little pink crocs.....cause it's all about the little pink shoes...:)
Thursday, May 22, 2014
Glimpses, glances and hopes
So I've been quiet for a little bit and it's because I've been struggling. We were placed on a new medication to help the Peanugga tolerate tummy (G) feeds better in hopes of less vomit and progress and it has been great. Too bad in the middle of it when we caught that first hopeful glimpse of coming off the J feeds she ended up throwing up while sleeping which startled her and she gasped right in the middle of it which resulted in our first encounter with aspiration pneumonia. When you hear "aspiration" anything it results in this unbelievable fear that our feeding issues may multiply. We've had therapists and doctor's in the past question how we've never dealt with this before with the massive amounts of vomit we have dealt with and all the major GERD/reflux issues. I'm not sure how we haven't but I'm very thankful that we didn't and I'm praying really hard that it was a total fluke one time incident. After the pneumonia we had a few really good days and got out to enjoy some nice weather and she ended up sick again.....allergies? maybe? The runny nose, coughing and congestion has made us stop all tummy feeds for an entire week because they all result in vomit. The vomit causes horrible stress for me...it causes weight worries, aspiration worries....It also causes me heartache and fear....for the first time in well over a year I finally caught a glimpse of what it would be like to have all tummy feeds and no more night feeds and it seems as quickly as I finally acknowledged that hope the whole thing blew up in my face. I can't even put into words how that makes me feel and add to it that we finally had her taking some foods by mouth and all of that stops too when the vomit starts....one step forward two steps back.....:(
On top of all of the "normal" Peanugga stuff in our lives we are getting ready for my son to graduate tomorrow. I never in a million years thought I'd be the boohoo mama but apparently that is exactly what I have turned in to. I am so incredibly proud of him and the young man he has turned out to be. He has had to grow up way too fast with all the unexpected events in our lives. It seems like if I blink my eyes it was just yesterday that it was him I was watching play on the floor and now he's all grown up. He is amazing to watch with Madilyn. I think her Uncle Thomas is her favorite person ever....they have a bond that I can't explain but when you see him with her it makes you tear up. Thankfully we have lots of family help with Madilyn so his graduation can be all about him.
There have been way too many times in the past two and a half years that my children and husband have voluntarily taken a backseat on my priority list in order for me to take care of Madilyn. They have never complained and for that I am thankful but it does not ease my own self-inflicted guilt that at times with all the travel and extended stays in Milwaukee that I feel my children are growing up without a mother. I am very thankful to all of their friends mother's that have stepped in as surrogates and cheered them on at their sporting events when I could not be there and have opened their hearts and homes to my children where they could escape and just be normal for a little while. Without you other mom's and dad's that have done this for my children they wouldn't be a wonderful as they are and you deserve that acknowledgement and my gratitude. I do find lately though that along with that gratitude comes some feeling of jealousy for all of the things that I have missed out on with them in my place.
I think it's time for me to invest in some pink shoes of my own for walking.....and to hold on to my hopes and dreams no matter how many road blocks and detours may be in the way.....after all, it's all about the pink shoes...
On top of all of the "normal" Peanugga stuff in our lives we are getting ready for my son to graduate tomorrow. I never in a million years thought I'd be the boohoo mama but apparently that is exactly what I have turned in to. I am so incredibly proud of him and the young man he has turned out to be. He has had to grow up way too fast with all the unexpected events in our lives. It seems like if I blink my eyes it was just yesterday that it was him I was watching play on the floor and now he's all grown up. He is amazing to watch with Madilyn. I think her Uncle Thomas is her favorite person ever....they have a bond that I can't explain but when you see him with her it makes you tear up. Thankfully we have lots of family help with Madilyn so his graduation can be all about him.
There have been way too many times in the past two and a half years that my children and husband have voluntarily taken a backseat on my priority list in order for me to take care of Madilyn. They have never complained and for that I am thankful but it does not ease my own self-inflicted guilt that at times with all the travel and extended stays in Milwaukee that I feel my children are growing up without a mother. I am very thankful to all of their friends mother's that have stepped in as surrogates and cheered them on at their sporting events when I could not be there and have opened their hearts and homes to my children where they could escape and just be normal for a little while. Without you other mom's and dad's that have done this for my children they wouldn't be a wonderful as they are and you deserve that acknowledgement and my gratitude. I do find lately though that along with that gratitude comes some feeling of jealousy for all of the things that I have missed out on with them in my place.
I think it's time for me to invest in some pink shoes of my own for walking.....and to hold on to my hopes and dreams no matter how many road blocks and detours may be in the way.....after all, it's all about the pink shoes...
Saturday, April 12, 2014
Blessings and changes
The last few months have been crazy for us. All of the time stuck at home between snow storms, freezing cold temperatures and health issues has made us a little shack happy. We've been to Milwaukee for appointments 5 times already since the end of January. This last trip was a girls trip. Madilyn and I brought my 12 year old daughter Shyanne with us so she could experience Children's Hospital and all of the things Madilyn goes through at her appointments.
After 8.5 hours of nonstop running from one appointment to another and all the poking and prodding Shyanne was as tired as us. We started our day with GI which is always great cause our GI doc loves Madilyn and the fact that she's gained so much weight. He is actually a little worried that she's still gaining too fast. Sometimes I feel like we can't win, too slow...too fast...where's the happy medium???
We've been having some issues with the g-tube (direct to her stomach) feeds that end up with vomiting episodes so GI has started her on a new medication that will hopefully help with that. Today was day #1 and we made it through all 3 g feeds with no vomiting or gagging so I am hopeful.
Next up was Endochrine and they monitor her growth really close. Her regular doctor was on vacation so we saw another one and when he saw her he said she needs growth hormones..NOW...I politely explained that she's been through enough and as long as she's proportionate she's fine, we're not injecting her daily just so she can be someone else's version of "normal"...she's been through enough and that is a battle we are choosing not to fight right now or probably ever. After Endochrine we went to the scoliosis clinic for the ortho doctor to see her for the first time. Madilyn had a very "functional shift" to one side due to vision issues for a very long time and with her hypotonia (low tone) they just like to see them to make sure everything is the way it should be and thankfully it is!
We then went to Interventional Radiology and finally got the feeding tube switched from a 12 inch long peg to a cute little glow in the dark button! They had to sedate her for this which was okay because she had a quick brain MRI right after it to check out her new shunt catheter. Both of these appointments went great and the neurosurgeon is very happy with the way her shunt is functioning so the day was a huge success in my book!
We're settling into our normal again after the shunt scare and are looking forward to hopefully staying home until July now. Her emergency shunt surgery eliminated one May appointment and when she had her eyes examined under anesthesia on March 21st the fluid pocket had improved so he is seeing her again in July instead of May. Hooray for an unexpected little break!
Madilyn's busy busy and never stops moving or chattering which is such a blessing for us. She also had her very first round of professional pictures today! I'll be sure to post one or two when we get them back. Pictures are not something we've ever been able to do as Madilyn does not cooperate and definitely runs the show. Thankfully the photographer (my friend Krista) had a ton of patience and it paid off!
Thankfully the snow is melting and we're finally seeing signs of Spring. I can't wait to be able to be outside with Madilyn in her gait trainer and watch her explore and be able to run around with other kids.....especially since we have new little pink tennis shoes...again...we love shoes.....it's all about the shoes!!
After 8.5 hours of nonstop running from one appointment to another and all the poking and prodding Shyanne was as tired as us. We started our day with GI which is always great cause our GI doc loves Madilyn and the fact that she's gained so much weight. He is actually a little worried that she's still gaining too fast. Sometimes I feel like we can't win, too slow...too fast...where's the happy medium???
We've been having some issues with the g-tube (direct to her stomach) feeds that end up with vomiting episodes so GI has started her on a new medication that will hopefully help with that. Today was day #1 and we made it through all 3 g feeds with no vomiting or gagging so I am hopeful.
Next up was Endochrine and they monitor her growth really close. Her regular doctor was on vacation so we saw another one and when he saw her he said she needs growth hormones..NOW...I politely explained that she's been through enough and as long as she's proportionate she's fine, we're not injecting her daily just so she can be someone else's version of "normal"...she's been through enough and that is a battle we are choosing not to fight right now or probably ever. After Endochrine we went to the scoliosis clinic for the ortho doctor to see her for the first time. Madilyn had a very "functional shift" to one side due to vision issues for a very long time and with her hypotonia (low tone) they just like to see them to make sure everything is the way it should be and thankfully it is!
We then went to Interventional Radiology and finally got the feeding tube switched from a 12 inch long peg to a cute little glow in the dark button! They had to sedate her for this which was okay because she had a quick brain MRI right after it to check out her new shunt catheter. Both of these appointments went great and the neurosurgeon is very happy with the way her shunt is functioning so the day was a huge success in my book!
We're settling into our normal again after the shunt scare and are looking forward to hopefully staying home until July now. Her emergency shunt surgery eliminated one May appointment and when she had her eyes examined under anesthesia on March 21st the fluid pocket had improved so he is seeing her again in July instead of May. Hooray for an unexpected little break!
Madilyn's busy busy and never stops moving or chattering which is such a blessing for us. She also had her very first round of professional pictures today! I'll be sure to post one or two when we get them back. Pictures are not something we've ever been able to do as Madilyn does not cooperate and definitely runs the show. Thankfully the photographer (my friend Krista) had a ton of patience and it paid off!
Thankfully the snow is melting and we're finally seeing signs of Spring. I can't wait to be able to be outside with Madilyn in her gait trainer and watch her explore and be able to run around with other kids.....especially since we have new little pink tennis shoes...again...we love shoes.....it's all about the shoes!!
Wednesday, March 19, 2014
Med flights and shunt malfunctions
We've been having some "issues" since early February, up until this past Saturday morning they were all chalked up to "it must be a virus". I absolutely positively despise those words. Those are a doctor's polite way of saying I have absolutely no clue what is wrong. Madilyn was fine on Friday morning and then she went down for her nap...when she woke up her eyes didn't look right. They tend to flutter when she's tired but they appeared to be little slits and when they were open her eyes were darting in completely opposite directions. I watched her closely for quite a while and then noticed she went completely cross-eyed...this NEVER happens and is a huge flag for a shunt malfunction. I also noticed her balance that we've worked so hard for was not there so I called Special Needs in Milwaukee and talked to them and brought her to our local emergency room.
It's difficult to explain the panic I felt bringing her there. One moment she appeared fine and the next everything was haywire. Thank god the local doctor that was on duty that evening knows me and Madilyn and knew something wasn't right. Med flight was arranged to bring us to Milwaukee and by 1:30 am we were on our way. This is the second time we had to med flight to Milwaukee and it scares the daylights out of me, Madilyn however, loves the plane ride...the ride doesn't bother me either it's just the circumstances surrounding it that tend to drive me crazy with worry and panic.
When we arrived at Children's Hospital emergency room the chaos ensued when the first ER doc acted like I was a little crazy....I do realize they deal with people every day that insist there's something wrong with their child when there really isn't, this however wasn't our case and I was adamant. They went over her labs from our local hospital, multiple doctors came and looked at Madilyn and talked to me and they finally sent us for shunt series x-rays. The doctor came in a little while later and said the shunt series showed absolutely no problem with it. I freaked out! At this point Madilyn had a constant tic on her left side and was unable to sit much less to anything else, she was struggling just to pick her head up and could barely open her eyes and the whole time she kept letting out with this horrid gut wrenching painful screech. I totally flipped on that doctor and demanded they do something because something was seriously wrong and for the third time in a year I could feel her slipping away from me.
He agreed to send us for a CT scan to check the shunt and within 35 minutes of heading to the scan we were heading to emergency surgery. The catheter part of her shunt that goes into the ventricle and does the draining had come out and the pressure on her brain was building quickly. Surgery last an hour and a half and thankfully all of her symptoms were gone afterwards. It amazes me that they can open up their head and repair something that goes into her brain and less than 24 hours later we were ready to come home.
We were informed by the neurosurgeon that all of the feeding "virus" issues that sent us to Milwaukee in mid-February and the sleep issues were probably all the shunt starting to malfunction. My gut told me then that they missed something but it wasn't a feeling that made me panic like when she woke from her nap that day. That day was the third time in 13 months that I was told that if I didn't trust my instincts and had just put her to bed she probably would've never woken up. Those are the hardest words I have ever heard and hearing them once was awful but three times....CRAZY!!!
I don't focus on the "what could've happened" because I trusted my gut and it turned out for the best and if I focus on what could've happened I will miss out on way to much of the now. It does put it into perspective just how precious every single moment is in our lives. They don't give us life expectancy guesses with Madilyn because they don't know. She could live for 70 years or 7...they've never seen her grouping of rare diseases and her complex X-chromosome abnormality they know nothing about so we choose to make long-term plans but we live in the now and are thankful for every single moment that we get.
As we are really wanting to just recuperate from this whole thing life must go on and we are packing to head to Milwaukee again for another eye exam under anesthesia to make sure the fluid pocket hasn't moved. So for the next few days we will pray exceptionally hard for no changes, we will enjoy every moment and we will wear her new little pink shoes......cause that's what it's really about.....those little pink shoes.
It's difficult to explain the panic I felt bringing her there. One moment she appeared fine and the next everything was haywire. Thank god the local doctor that was on duty that evening knows me and Madilyn and knew something wasn't right. Med flight was arranged to bring us to Milwaukee and by 1:30 am we were on our way. This is the second time we had to med flight to Milwaukee and it scares the daylights out of me, Madilyn however, loves the plane ride...the ride doesn't bother me either it's just the circumstances surrounding it that tend to drive me crazy with worry and panic.
When we arrived at Children's Hospital emergency room the chaos ensued when the first ER doc acted like I was a little crazy....I do realize they deal with people every day that insist there's something wrong with their child when there really isn't, this however wasn't our case and I was adamant. They went over her labs from our local hospital, multiple doctors came and looked at Madilyn and talked to me and they finally sent us for shunt series x-rays. The doctor came in a little while later and said the shunt series showed absolutely no problem with it. I freaked out! At this point Madilyn had a constant tic on her left side and was unable to sit much less to anything else, she was struggling just to pick her head up and could barely open her eyes and the whole time she kept letting out with this horrid gut wrenching painful screech. I totally flipped on that doctor and demanded they do something because something was seriously wrong and for the third time in a year I could feel her slipping away from me.
He agreed to send us for a CT scan to check the shunt and within 35 minutes of heading to the scan we were heading to emergency surgery. The catheter part of her shunt that goes into the ventricle and does the draining had come out and the pressure on her brain was building quickly. Surgery last an hour and a half and thankfully all of her symptoms were gone afterwards. It amazes me that they can open up their head and repair something that goes into her brain and less than 24 hours later we were ready to come home.
We were informed by the neurosurgeon that all of the feeding "virus" issues that sent us to Milwaukee in mid-February and the sleep issues were probably all the shunt starting to malfunction. My gut told me then that they missed something but it wasn't a feeling that made me panic like when she woke from her nap that day. That day was the third time in 13 months that I was told that if I didn't trust my instincts and had just put her to bed she probably would've never woken up. Those are the hardest words I have ever heard and hearing them once was awful but three times....CRAZY!!!
I don't focus on the "what could've happened" because I trusted my gut and it turned out for the best and if I focus on what could've happened I will miss out on way to much of the now. It does put it into perspective just how precious every single moment is in our lives. They don't give us life expectancy guesses with Madilyn because they don't know. She could live for 70 years or 7...they've never seen her grouping of rare diseases and her complex X-chromosome abnormality they know nothing about so we choose to make long-term plans but we live in the now and are thankful for every single moment that we get.
As we are really wanting to just recuperate from this whole thing life must go on and we are packing to head to Milwaukee again for another eye exam under anesthesia to make sure the fluid pocket hasn't moved. So for the next few days we will pray exceptionally hard for no changes, we will enjoy every moment and we will wear her new little pink shoes......cause that's what it's really about.....those little pink shoes.
Friday, February 28, 2014
Living with multiple rare diseases and the things nobody ever told me...
Today is Rare Disease Day and it's time to share more details of what it's like living with multiple rare diseases. There are a lot of things nobody ever told us when we started this journey with Madilyn and they still don't say it...maybe because it's not politically correct or it's discouraging or because they just don't know what to say. I'm going to take the liberty of saying it for them...
1. Living with multiple rare diseases and special needs is lonely.....you feel very alone and in most cases you are. In our case there is nobody else in the world that lives with the Complex X-chromosome abnormality that Madilyn has and her other diagnosis like the Dandy-Walker Syndrome, Turner's Syndrome Mosaic, her feeding disorder, hydrocephalus, hypotonia, and ROP (vision) are all rare....if it wasn't for the internet I wouldn't know anyone at all with her diagnosis.
2. Rare disease pretty much equals no answers ever. Madilyn has some of the top specialists in the world overseeing her medical needs and we rarely ever get answers. I'm not sure, I don't know and let's try this and see what happens are the most common answers we hear. Unbelievably frustrating and at the same time these answers become oddly acceptable because when there is no funding (or very minimal) for research how can we ever expect them to be able to answer our questions. Everything is a giant game of chance, maybe it'll work, maybe it won't.
3. You learn your own language. Madilyn is starting to talk now but there are a lot of rare disease/special needs children that don't and her vocabulary is no where big enough to communicate some very key things. I never really realized how Madilyn and I communicate because we do it every day so when my nephew was here a few weeks ago he was watching Madilyn and I together and he said "it's so cool to watch you two, it's like you have your own little language"........it made me smile cause yes we sure do..you have to in order to do what's best for your child.
4. You will feel tremendous envy when your other family members and friends get to go on with their "normal" lives and yours is like planning a trip to Alaska just to make it to therapy and the grocery store in the same day.
5. People will stare...oh boy do they stare when we go into a public place hooked up to the feeding pump and with her little glasses on....it's okay...let them stare, it doesn't hurt anything.
6. People will talk....If I had a nickel for every time a stranger in Walmart feels the need to tell me my child looks so tired and needs a nap I'd be rich. I usually just smile and say yes she is, because she is....but here's the real reason...Madilyn's muscles don't always work like ours do..with her hypotonia holding her head up and sitting are not simple like they are for us so when I have her in a shopping cart it's a ton of work for her to keep her head up constantly with no type of support behind her to help her out. So yes, she's tired but not for the reasons people think. I've actually found myself going into explanation if the same person has said this to me more than once because I feel the need to educate everyone in regards to Madilyn. This often leaves me with people telling me how sorry they are, which leaves me more frustrated because sympathy is not what I am looking for.
7. There is never enough money. All the trips to see her doctor's and specialty items she needs are crazy expensive....I can't just sit her in a chair, she will fall out on her head, or jump out because she's constantly sensory seeking and has the highest pain tolerance ever. I can't sit her on the floor and walk away...that's getting better but everything takes time....1000 times longer than with normal children.....and costs so much more. It forces me to be creative out of necessity...I'll figure out a way to modify the $30 chair to suit our needs because I don't have the minimum of $300-over $1000 to purchase the ones that are made for children like her.
8. Your rare disease/special needs child will teach you more patience, tolerance, compassion and creativity than you ever knew existed but at the end of the day we are still human. I was up one night several weeks ago and found myself mentally giving kudos to the guy that had the courage to publish the book (for adults) called Go the F#@k to Sleep. I actually giggled out loud as Madilyn is standing on my lap holding my hands squealing and flinging herself wildly back and forth with that constant sensory seeking need that drives her. It was probably the lack of sleep that got to me but when I acknowledged at the moment that I totally and completely understood the book I read once years ago it made me feel normal. It made me feel like we were normal....I never said it out loud and never thought I'd put that thought in print....but it was a totally liberating and humorous moment for a Nana that rarely ever gets to sleep. It's funny how your thoughts change throughout time...up until recently I always said she can keep me up all night if she wants as long as she's here with us and thriving....well she's here and she's absolutely thriving and now I want her to learn to sleep...:)
9. Your therapists and nurses will become your "friends" because your friends are too busy having their own life and don't understand yours. I am learning that we tend to make people uncomfortable, in reality I would be uncomfortable watching us from the outside. The reality is most days making it to a 5 minute shower is a huge accomplishment. Our "normal" freaks people out....suction bags, feeding tubes and VP shunts and gait trainers are our normal.......it's okay if you're freaked out and I won't be offended if you tell me that.
10. Find a friend, that lives a similar life to you, it will improve your life dramatically. When you have another child that isn't "normal" and your kids can just be who they are and play it's awesome! When you can sit and rattle off tests and other medical/therapy terminology without having to give descriptions because they understand already what you're talking about makes you feel normal for a while. You live the life and when you can find that one other person that truly understands it and isn't just feeling sorry for you it's amazing. I found that, finally, 2 years into this life I found that. I can't explain how liberating it is to be able to text someone and simply state...I want to scream....and they don't think you're crazy, they just get it. For me this friend was the biggest missing chunk to our rare disease filled special needs life. It's like the missing puzzle piece has been found and our girls are AMAZING to watch together...they are inspiring!
11. My last one...I promise...bug everyone you know to raise awareness...if people don't know what you live with they will never understand it. I don't expect them to understand it anyway but I hope it will make them a little more tolerant and compassionate towards others.
You can't always see rare disease on someone's face or in their external appearance at all so before you judge someone think twice because you never know what they are living with......
1. Living with multiple rare diseases and special needs is lonely.....you feel very alone and in most cases you are. In our case there is nobody else in the world that lives with the Complex X-chromosome abnormality that Madilyn has and her other diagnosis like the Dandy-Walker Syndrome, Turner's Syndrome Mosaic, her feeding disorder, hydrocephalus, hypotonia, and ROP (vision) are all rare....if it wasn't for the internet I wouldn't know anyone at all with her diagnosis.
2. Rare disease pretty much equals no answers ever. Madilyn has some of the top specialists in the world overseeing her medical needs and we rarely ever get answers. I'm not sure, I don't know and let's try this and see what happens are the most common answers we hear. Unbelievably frustrating and at the same time these answers become oddly acceptable because when there is no funding (or very minimal) for research how can we ever expect them to be able to answer our questions. Everything is a giant game of chance, maybe it'll work, maybe it won't.
3. You learn your own language. Madilyn is starting to talk now but there are a lot of rare disease/special needs children that don't and her vocabulary is no where big enough to communicate some very key things. I never really realized how Madilyn and I communicate because we do it every day so when my nephew was here a few weeks ago he was watching Madilyn and I together and he said "it's so cool to watch you two, it's like you have your own little language"........it made me smile cause yes we sure do..you have to in order to do what's best for your child.
4. You will feel tremendous envy when your other family members and friends get to go on with their "normal" lives and yours is like planning a trip to Alaska just to make it to therapy and the grocery store in the same day.
5. People will stare...oh boy do they stare when we go into a public place hooked up to the feeding pump and with her little glasses on....it's okay...let them stare, it doesn't hurt anything.
6. People will talk....If I had a nickel for every time a stranger in Walmart feels the need to tell me my child looks so tired and needs a nap I'd be rich. I usually just smile and say yes she is, because she is....but here's the real reason...Madilyn's muscles don't always work like ours do..with her hypotonia holding her head up and sitting are not simple like they are for us so when I have her in a shopping cart it's a ton of work for her to keep her head up constantly with no type of support behind her to help her out. So yes, she's tired but not for the reasons people think. I've actually found myself going into explanation if the same person has said this to me more than once because I feel the need to educate everyone in regards to Madilyn. This often leaves me with people telling me how sorry they are, which leaves me more frustrated because sympathy is not what I am looking for.
7. There is never enough money. All the trips to see her doctor's and specialty items she needs are crazy expensive....I can't just sit her in a chair, she will fall out on her head, or jump out because she's constantly sensory seeking and has the highest pain tolerance ever. I can't sit her on the floor and walk away...that's getting better but everything takes time....1000 times longer than with normal children.....and costs so much more. It forces me to be creative out of necessity...I'll figure out a way to modify the $30 chair to suit our needs because I don't have the minimum of $300-over $1000 to purchase the ones that are made for children like her.
8. Your rare disease/special needs child will teach you more patience, tolerance, compassion and creativity than you ever knew existed but at the end of the day we are still human. I was up one night several weeks ago and found myself mentally giving kudos to the guy that had the courage to publish the book (for adults) called Go the F#@k to Sleep. I actually giggled out loud as Madilyn is standing on my lap holding my hands squealing and flinging herself wildly back and forth with that constant sensory seeking need that drives her. It was probably the lack of sleep that got to me but when I acknowledged at the moment that I totally and completely understood the book I read once years ago it made me feel normal. It made me feel like we were normal....I never said it out loud and never thought I'd put that thought in print....but it was a totally liberating and humorous moment for a Nana that rarely ever gets to sleep. It's funny how your thoughts change throughout time...up until recently I always said she can keep me up all night if she wants as long as she's here with us and thriving....well she's here and she's absolutely thriving and now I want her to learn to sleep...:)
9. Your therapists and nurses will become your "friends" because your friends are too busy having their own life and don't understand yours. I am learning that we tend to make people uncomfortable, in reality I would be uncomfortable watching us from the outside. The reality is most days making it to a 5 minute shower is a huge accomplishment. Our "normal" freaks people out....suction bags, feeding tubes and VP shunts and gait trainers are our normal.......it's okay if you're freaked out and I won't be offended if you tell me that.
10. Find a friend, that lives a similar life to you, it will improve your life dramatically. When you have another child that isn't "normal" and your kids can just be who they are and play it's awesome! When you can sit and rattle off tests and other medical/therapy terminology without having to give descriptions because they understand already what you're talking about makes you feel normal for a while. You live the life and when you can find that one other person that truly understands it and isn't just feeling sorry for you it's amazing. I found that, finally, 2 years into this life I found that. I can't explain how liberating it is to be able to text someone and simply state...I want to scream....and they don't think you're crazy, they just get it. For me this friend was the biggest missing chunk to our rare disease filled special needs life. It's like the missing puzzle piece has been found and our girls are AMAZING to watch together...they are inspiring!
11. My last one...I promise...bug everyone you know to raise awareness...if people don't know what you live with they will never understand it. I don't expect them to understand it anyway but I hope it will make them a little more tolerant and compassionate towards others.
You can't always see rare disease on someone's face or in their external appearance at all so before you judge someone think twice because you never know what they are living with......
Friday, February 14, 2014
Feeding Frustrations and Awareness
February 9-15th is National Feeding Tube Awareness Week....how appropriate considering the week we've had. Madilyn was doing awesome until a little over a week ago. She was up to 21 pounds 5 ounces and we were starting feeds into her stomach again and making really good, quick progress......and then she caught a slight cold. When I say slight I mean slight...low grade fever for 48 hours and some sneezing, that's it. No big deal....right? Think again.
We started Saturday suddenly puking up a few feeds and waking 3 to 4 hours after starting her night feed just screaming. Screaming like she was in unbearable pain and gagging and puking. We slowed and diluted the feeds for a few days and nothing seemed to help. Tuesday I weighed her and she was down to 20 pounds 7 ounces in less than a week so I called her GI doctor in Milwaukee and they feared that her feeding tube had either kinked or become displaced so it was an emergency trip to Milwaukee on Wednesday for a 15 minute appointment to check placement. Her tube was fine.......
I'm very thankful her tube was still in place but it still doesn't answer what's going on with her then. They have us slowing her feeds way down which means we are spending 18+ hours per day hooked up to the feeding pump again and she's still not gaining weight yet. There are times that we have no choice but to unhook her regardless of her much needed caloric intake as she begins to relentlessly gag herself. She crams that little fist all the way down into her throat and is digging at her throat...she used to do this before her stomach finally healed after her tube change surgery last August. Now the difference is she's older and does it with a vengeance because she needs some type of relief from whatever is bothering her internally. It scares me when she does it because she has made herself bleed and I fear that she will do damage to her throat or esophagus. It's times like this that I wish she had more of a vocabulary and could tell me what's wrong. When she's not feeding she's happy as can be which leaves me even more perplexed.
I cannot even begin to explain the frustration I feel after driving 7 hours one way for an emergency appointment and coming out with absolutely no answers. They instructed us to slow her feeds down even more and to call on Monday with an update and if she's still not gaining weight and tolerating better than it's back to Milwaukee to be inpatient so they can watch and observe and attempt to figure out what's going on.
It's crushing to realize just how quickly all the progress we've made with the feedings can so quickly be undone....and all from a minuscule little cold.....I can't even begin to explain the tremendous amount of grief it causes me.
I keep praying that she'll wake up and her feeds will suddenly go fine and her weight will jump up but I know the cold hard reality of it is that with a tube fed immune compromised child like Madilyn one bad day can undo months of progress.....I just pray we don't end up inpatient. I pray that all the recent gagging and vomiting will not completely undo all the progress we've made with her oral aversion. We finally had her putting food into her mouth for the first time in just over a year......
It's heartbreaking and frustrating and it's our life. With children like Madilyn we live with the unknown every single day. Unfortunately the doctor's not having any answers for us is more the norm than the rare occasion. So when you're healthy little one wants just one more cookie .....please give it to them and count your blessings to be able to do something so normal.....
We started Saturday suddenly puking up a few feeds and waking 3 to 4 hours after starting her night feed just screaming. Screaming like she was in unbearable pain and gagging and puking. We slowed and diluted the feeds for a few days and nothing seemed to help. Tuesday I weighed her and she was down to 20 pounds 7 ounces in less than a week so I called her GI doctor in Milwaukee and they feared that her feeding tube had either kinked or become displaced so it was an emergency trip to Milwaukee on Wednesday for a 15 minute appointment to check placement. Her tube was fine.......
I'm very thankful her tube was still in place but it still doesn't answer what's going on with her then. They have us slowing her feeds way down which means we are spending 18+ hours per day hooked up to the feeding pump again and she's still not gaining weight yet. There are times that we have no choice but to unhook her regardless of her much needed caloric intake as she begins to relentlessly gag herself. She crams that little fist all the way down into her throat and is digging at her throat...she used to do this before her stomach finally healed after her tube change surgery last August. Now the difference is she's older and does it with a vengeance because she needs some type of relief from whatever is bothering her internally. It scares me when she does it because she has made herself bleed and I fear that she will do damage to her throat or esophagus. It's times like this that I wish she had more of a vocabulary and could tell me what's wrong. When she's not feeding she's happy as can be which leaves me even more perplexed.
I cannot even begin to explain the frustration I feel after driving 7 hours one way for an emergency appointment and coming out with absolutely no answers. They instructed us to slow her feeds down even more and to call on Monday with an update and if she's still not gaining weight and tolerating better than it's back to Milwaukee to be inpatient so they can watch and observe and attempt to figure out what's going on.
It's crushing to realize just how quickly all the progress we've made with the feedings can so quickly be undone....and all from a minuscule little cold.....I can't even begin to explain the tremendous amount of grief it causes me.
I keep praying that she'll wake up and her feeds will suddenly go fine and her weight will jump up but I know the cold hard reality of it is that with a tube fed immune compromised child like Madilyn one bad day can undo months of progress.....I just pray we don't end up inpatient. I pray that all the recent gagging and vomiting will not completely undo all the progress we've made with her oral aversion. We finally had her putting food into her mouth for the first time in just over a year......
It's heartbreaking and frustrating and it's our life. With children like Madilyn we live with the unknown every single day. Unfortunately the doctor's not having any answers for us is more the norm than the rare occasion. So when you're healthy little one wants just one more cookie .....please give it to them and count your blessings to be able to do something so normal.....
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