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!!
Saturday, April 12, 2014
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.....
Wednesday, January 15, 2014
Blessings and meltdowns
We just returned from Milwaukee and our first round of good appointments for this year. Madilyn has a fluid pocket on her right eye that could potentially detach her retina. It was discovered in November during her eye exam under anesthesia. Dr. Han (the retina specialist) feared it may detach in between appointments or that it would progress and he'd have to do another scleral buckle both outcomes could quite possibly leave her completely blind. We were blessed and there was no change. It is maintaining and we will return in March for another eye exam under anesthesia to monitor, as we do every two months. We'll continue to pray that it doesn't change or that it goes away, in the mean time we count our blessings every single day that she wakes up and can see us.
We next saw her GI doctor and he couldn't be more pleased with how much she's growing and how much she has progressed and changed since her surgery in August. We see him every three months but he was nice and let us slide a few extra weeks this time since she was gaining so well and didn't make us travel right before Christmas. Once again we count our blessings.
Our trip was extremely emotional, like riding a roller coaster. I don't know how to explain the emotions that come along with knowing your child is going into surgery with vision in only one eye and could potentially come out with none because they're trying to save it. When Madilyn had the first scleral buckle done the scar tissue she produced afterwards did more damage, the bad almost outweighed the good. We go into this now knowing that the scleral buckle may be our only hope each and every time she goes into that surgery so we pray. Every single morning that she wakes up and I know she can still see me brings me to tears.....and again, I count my many blessings.
I also got to witness her GJ feeding tube change on this trip. It is done in Intervention Radiology and is painless for Madilyn other than she gets mad cause I had to hold her still for two minutes while they did it. We all know how much two year olds love to be held still...she was one angry little girl, thankfully it's super quick and the staff was awesome. Once again I count my many blessings.
After the roller coaster ride we head home with happy reviews and run into horrible weather and the first leg of the trip that normally takes 2 hours takes 5. The first part when we could have easily turned off was all right and of course when we should have stopped there was nowhere to go. The stretch of nothingness seems never ending when you're going 5 mph trying to keep a toddler occupied while she's gagging herself every two seconds and throwing up because her throat is so irritated from the anesthesia the previous day.
It's after the weather clears when I admit to my husband how scared I was but everything is clear and we keep heading towards home. At this point the toddler is finally sleeping peacefully after hours of Roli Poli Olli on the portable DVD player (if I never hear that again it's too soon...). It's in this clear silent stretch somewhere between Crivitz and Iron Mountain that everything crashes in on me and the tears start. Unstoppable tears of relief and frustration. Relief she can still see, frustration cause the relief only lasts for a moment. Tears of fear because the GI doctor wants us to start doing daytime bolus feeds again with Madilyn. Bolus feeds for me bring back months and months of massive vomiting and our life revolving around a feeding/puking schedule. At the same time I am hopeful that her stomach is healed enough to handle the feeds without the vomiting.
It's during this time that I am thankful that my husband is focused on driving or obliviously lost in his own whirlwind of emotions and just lets me cry, I don't want to talk, just cry. This seems to have become somewhat of a ritual for me, one I feel I have no control over. Either way when it's over and I'm done crying my tears of happiness, relief, anger and frustration I look into the face of that sweet little girl that calls me Nana and count my blessings. I chuckle to myself at how far we've come because this is the first trip that she actually told the surgical prep nurse No...a very clear, very distinct no when she wanted to check her vitals. She also yelled at the GI doctor until her told her he was only going to listen to her and she understood and stopped yelling and let him listen to her.
It's hard to explain the emotions that come along with Madilyn's reactions to walking through the skywalk at the hospital. She knows where we are and she knows she'll get poked and prodded and doesn't hesitate to express her dislike of the whole situation. The older she gets the harder it gets, at least when she was smaller she was oblivious......I thank god every single day for the progress we've made but at the same time question all the time why children like my Madilyn have to go through the things that they do. She doesn't like them touching her, the whole experience is very upsetting to her and to us. No matter how great the appointments are I come home feeling like I've been hit by a truck and so does Madilyn. We always take the day after we get home off........off from therapies, off from visitors and just hang out in our jammies at home and play. It is much needed down time that we don't get very often.
Just when I think the roller coaster has almost slowed to a stop it's time to call and schedule the next round of appointments....the last few times I've let Special Needs Care Coordination handle this for me but this time I did it myself...........so the coaster is set at a slow, straight, steady cruise for two months...where we'll be busy making progress at home and getting ready for the March, April and May appointments....but most of all we'll be busy counting our blessings.....
We next saw her GI doctor and he couldn't be more pleased with how much she's growing and how much she has progressed and changed since her surgery in August. We see him every three months but he was nice and let us slide a few extra weeks this time since she was gaining so well and didn't make us travel right before Christmas. Once again we count our blessings.
Our trip was extremely emotional, like riding a roller coaster. I don't know how to explain the emotions that come along with knowing your child is going into surgery with vision in only one eye and could potentially come out with none because they're trying to save it. When Madilyn had the first scleral buckle done the scar tissue she produced afterwards did more damage, the bad almost outweighed the good. We go into this now knowing that the scleral buckle may be our only hope each and every time she goes into that surgery so we pray. Every single morning that she wakes up and I know she can still see me brings me to tears.....and again, I count my many blessings.
I also got to witness her GJ feeding tube change on this trip. It is done in Intervention Radiology and is painless for Madilyn other than she gets mad cause I had to hold her still for two minutes while they did it. We all know how much two year olds love to be held still...she was one angry little girl, thankfully it's super quick and the staff was awesome. Once again I count my many blessings.
After the roller coaster ride we head home with happy reviews and run into horrible weather and the first leg of the trip that normally takes 2 hours takes 5. The first part when we could have easily turned off was all right and of course when we should have stopped there was nowhere to go. The stretch of nothingness seems never ending when you're going 5 mph trying to keep a toddler occupied while she's gagging herself every two seconds and throwing up because her throat is so irritated from the anesthesia the previous day.
It's after the weather clears when I admit to my husband how scared I was but everything is clear and we keep heading towards home. At this point the toddler is finally sleeping peacefully after hours of Roli Poli Olli on the portable DVD player (if I never hear that again it's too soon...). It's in this clear silent stretch somewhere between Crivitz and Iron Mountain that everything crashes in on me and the tears start. Unstoppable tears of relief and frustration. Relief she can still see, frustration cause the relief only lasts for a moment. Tears of fear because the GI doctor wants us to start doing daytime bolus feeds again with Madilyn. Bolus feeds for me bring back months and months of massive vomiting and our life revolving around a feeding/puking schedule. At the same time I am hopeful that her stomach is healed enough to handle the feeds without the vomiting.
It's during this time that I am thankful that my husband is focused on driving or obliviously lost in his own whirlwind of emotions and just lets me cry, I don't want to talk, just cry. This seems to have become somewhat of a ritual for me, one I feel I have no control over. Either way when it's over and I'm done crying my tears of happiness, relief, anger and frustration I look into the face of that sweet little girl that calls me Nana and count my blessings. I chuckle to myself at how far we've come because this is the first trip that she actually told the surgical prep nurse No...a very clear, very distinct no when she wanted to check her vitals. She also yelled at the GI doctor until her told her he was only going to listen to her and she understood and stopped yelling and let him listen to her.
It's hard to explain the emotions that come along with Madilyn's reactions to walking through the skywalk at the hospital. She knows where we are and she knows she'll get poked and prodded and doesn't hesitate to express her dislike of the whole situation. The older she gets the harder it gets, at least when she was smaller she was oblivious......I thank god every single day for the progress we've made but at the same time question all the time why children like my Madilyn have to go through the things that they do. She doesn't like them touching her, the whole experience is very upsetting to her and to us. No matter how great the appointments are I come home feeling like I've been hit by a truck and so does Madilyn. We always take the day after we get home off........off from therapies, off from visitors and just hang out in our jammies at home and play. It is much needed down time that we don't get very often.
Just when I think the roller coaster has almost slowed to a stop it's time to call and schedule the next round of appointments....the last few times I've let Special Needs Care Coordination handle this for me but this time I did it myself...........so the coaster is set at a slow, straight, steady cruise for two months...where we'll be busy making progress at home and getting ready for the March, April and May appointments....but most of all we'll be busy counting our blessings.....
Wednesday, January 8, 2014
Wishes and Reality
I spent all of last year wishing and wishing for less trips in 2014. I can't even begin to count how many times I've sat down and tried to figure out how to make less trips to Milwaukee. The countless hours wishing and praying for less trips. We had ten of them last year and more than half were anywhere from 4-5 days. Oh how I wished for less trips.....................
Then we saw the retina specialist in November and he completely crashed that idea when he discovered the fluid pocket on Madilyn's right eye (the only eye she has any vision) and we went from seeing him every six months right back to every two. I was crushed............
We also found out around that time that a hospital only two hours away vs the 7 we travel is capable of doing Madilyn's G/J feeding tube changes every 3 months and I got sooooo excited............and then they refused to see her because her medical history/diagnosis is so complex.........they're afraid of her. So once again I was crushed..............
So I had my pity party (which lasted about 8 minutes) and reassessed the situation and made my wishes more compatible with my reality. We traded the most beautiful, luxurious, spacious gas guzzling Tahoe for a comfy, fun to drive and fuel efficient car.......we ordered a portable DVD player to entertain the Peanugga on these trips so she can watch her favorite cartoons and listen to her music videos in the car and during the long days at the hospital during appointments..........and I altered my wishes.
Now I wish for good appointments instead of less. I wish for the chance to go to the zoo and the aquarium while on these trips and to have at least one meal that doesn't come from a drive-thru, hospital cafeteria or mall food court on at least half of the upcoming trips. I've come to terms with the fact that no matter how "healthy" we get Madilyn and regardless of how much she is thriving all the risk factors are still there. I've accepted that no matter what they will still want to physically see her in order to monitor her and in most departments they have no other option. Neonatal Development has to see her twice per year to track her progress to assign or redirect therapies for her, Endochrine has to track her growth, GI has to monitor her growth and her feeding tube, Neurology has to monitor her shunt and her Dandy-Walker, the retina specialist has to continually see her in hopes of maintaining her vision, the ophthalmologist has to see her to moni.tor her glasses/vision needs and Genetics has to see her because she is one of a kind in the world so they have to monitor her because she wasn't even supposed to live with her chromosome lines much less thrive. So we wish for good trips and happy specialists and for no life threatening illnesses this year.
In the past few months we've had never ending ear infections (at least it felt that way with 3 in a row)...c-diff and 2-year molars and through it all Madilyn has made huge progress...she went from being completely uncooperative at physical therapy to showing off. She's taking steps and running everywhere in her walker which is awesome because we get her gait trainer (a walking aid) in two weeks and are very excited. She's suddenly back to putting food and everything else in her mouth so it makes me hopeful that she will start to consume something orally instead of just through her feeding tube. We are also nowhere near as dependent on the suction bag because her stomach is finally healing and that is amazing!!
I guess sometimes I forget how complex Madilyn is medically because we live it every single day. We don't take anything at all for granted but at the same time it is our "normal". My "job" is different therapy appointments 5 days a week, feeding tubes, shunt function and having fun with the sweetest little girl ever who has the most amazing belly laughs I have ever heard. If you had to wait over 1 1/2 years to hear those laughs finally come out you would totally understand why they bring tears to my eyes every single time.......to me, it is the most beautiful sound ever.....
So we still wish and dream because without wishes and dreams life doesn't have meaning.........we just make sure those wishes aren't quite so unattainable..........and we will shop for new little pink tennis shoes because in reality it's all about the little pink shoes...........
Tuesday, December 17, 2013
I wonder....
I wonder about a lot of things.......
I wonder if each of you reading this knows how much you mean to me?
I wonder what life would be like without so much financial stress?
I wonder is Madilyn's ear infections are ever going to go away?
I wonder if she's ever going to sleep through the night again?
I wonder what I'll do when she goes to school? what type of school?
I wonder if Madilyn is ever going to go back to eating somewhat normally or if being tube fed will always be part of our/her life?
I wonder is she will be self-sufficient someday or will she always need a caretaker?
I wonder if our therapists realize that most weeks they are the only adult interaction I have other than my immediate family and the teller in the checkout line?
I wonder what people think of me reaching out for fundraising help so we can attempt to breathe?
I wonder if I'll ever be able to go to work again or if full-time caregiver is my life?
I wonder if people, even those closest to me, realize just how often I cry?
I wonder if others realize just how much my children inspire me to be a better person?
I wonder if we will have to move away in order for my husband to obtain a better paying/benefits providing job?
I wonder if she'll ever be potty trained?
I wonder what it would be like to go to the grocery store without a set budget and meals planned?
I wonder if people know how amazing my son and daughter are with Madilyn?
I wonder if my husband knows how much he means to me even though I don't always show it?
I wonder if people know how hard it is for me to ask for help?
I wonder how long Madilyn will continue to do her new little war cry in her sleep before she lets out the tiniest little toot and contentedly goes back to sleep? Meanwhile, I'm awake watching her wondering why on earth she does that?
I wonder if people truly get as excited as I (we) do about the tiniest little accomplishments and milestones finally being met?
I wonder if her doctors/therapists know how overwhelming it is to know we have to add even more therapists?
I wonder if people realize how lonely and overwhelming our life can be at times?
I wonder if our new friend realizes how much it means to me to finally have someone in our lives that we have so much in common with?
I wonder most if people realize just how much I love my life even though it's a struggle?
Even with all of these concerns and wonders swimming in my head every single day I am learning not to dwell on them..........I am learning to live in the moment and for each tiny blessing that we have in our lives..........I am a work in progress, we all are.......I have learned to never, ever take anything for granted..not even the tiniest minuscule amount of progress or gesture of kindness.....
I guess my point of this whole blog is.....everyone has worries and concerns...we all have obstacles in our lives, some we share and some we don't....you never know what another person is going through..
So in the rush of our daily busy lives I ask that you :
1. smile at someone and say hello......it may be the only interaction they have
2. hold a door for someone or help carry someone's groceries
3. brush off the car next to you in the parking lot
4. attempt to do a random act of kindness every single day...........I speak from experience when I say it can change someone's life....:)
I wonder if each of you reading this knows how much you mean to me?
I wonder what life would be like without so much financial stress?
I wonder is Madilyn's ear infections are ever going to go away?
I wonder if she's ever going to sleep through the night again?
I wonder what I'll do when she goes to school? what type of school?
I wonder if Madilyn is ever going to go back to eating somewhat normally or if being tube fed will always be part of our/her life?
I wonder is she will be self-sufficient someday or will she always need a caretaker?
I wonder if our therapists realize that most weeks they are the only adult interaction I have other than my immediate family and the teller in the checkout line?
I wonder what people think of me reaching out for fundraising help so we can attempt to breathe?
I wonder if I'll ever be able to go to work again or if full-time caregiver is my life?
I wonder if people, even those closest to me, realize just how often I cry?
I wonder if others realize just how much my children inspire me to be a better person?
I wonder if we will have to move away in order for my husband to obtain a better paying/benefits providing job?
I wonder if she'll ever be potty trained?
I wonder what it would be like to go to the grocery store without a set budget and meals planned?
I wonder if people know how amazing my son and daughter are with Madilyn?
I wonder if my husband knows how much he means to me even though I don't always show it?
I wonder if people know how hard it is for me to ask for help?
I wonder how long Madilyn will continue to do her new little war cry in her sleep before she lets out the tiniest little toot and contentedly goes back to sleep? Meanwhile, I'm awake watching her wondering why on earth she does that?
I wonder if people truly get as excited as I (we) do about the tiniest little accomplishments and milestones finally being met?
I wonder if her doctors/therapists know how overwhelming it is to know we have to add even more therapists?
I wonder if people realize how lonely and overwhelming our life can be at times?
I wonder if our new friend realizes how much it means to me to finally have someone in our lives that we have so much in common with?
I wonder most if people realize just how much I love my life even though it's a struggle?
Even with all of these concerns and wonders swimming in my head every single day I am learning not to dwell on them..........I am learning to live in the moment and for each tiny blessing that we have in our lives..........I am a work in progress, we all are.......I have learned to never, ever take anything for granted..not even the tiniest minuscule amount of progress or gesture of kindness.....
I guess my point of this whole blog is.....everyone has worries and concerns...we all have obstacles in our lives, some we share and some we don't....you never know what another person is going through..
So in the rush of our daily busy lives I ask that you :
1. smile at someone and say hello......it may be the only interaction they have
2. hold a door for someone or help carry someone's groceries
3. brush off the car next to you in the parking lot
4. attempt to do a random act of kindness every single day...........I speak from experience when I say it can change someone's life....:)
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