We're making lemonade folks!! Lots and lots of lemonade! What else can you do when life hands you a boat load of lemons? It's either lemonade or get out the tequila!
It's been a really long winter in our house as usual. Several rounds of croup, one round of pneumonia, feeding struggles, sugar issues (one landed us inpatient again) and 5 months of failed surgery clearance.....so goes life in our house.
There's so much going on I'm not sure where to start. Ear infections, fluid build up and hearing loss is first. We started with chronic ear infections last fall which led to numerous surgery clearance failures so we saw ENT in March. Madilyn showed significant hearing loss and massive fluid build up. Tubes are set to go into her ears on May 18th along with a sedated hearing test (ABR) to determine if the hearing loss is permanent or will be remedied when the fluid is drained. We have our fingers and toes and everything else possible crossed that the tubes will "fix it". They are going to do her eye exam under anesthesia at the same time with possible scleral buckle. We haven't noticed anything off with her vision so we are again hopeful that the fluid pocket has remained stable and her vision will be safe.
On our recent trip to Milwuakee Children's Hospital we had a cluster of appointments (as usual) and we'll start with the good news. GI and Endochrine are super thrilled with Madilyn's growth!! She has grown 4 inches and gained 4 pounds in about 10 months! Endochrine said if she keeps growing at the rate she is she will "catch up" in the next 18 months. That's HUGE! They didn't know if she'd ever grow so this news made me very happy. Endochrine is not so happy with her sugar issues. They've been very significant since November and we do glucose monitoring at home. If the sugar crashes continue then we will have to be inpatient for a controlled critical sugar crash so they can do testing to try and figure out why it does it. Multiple times now Madilyn's sugar has crashed to organ failure and comatose ranges with her showing no outward signs of an issue. I won't lie...it's terrifying to hear that if I put her to bed she never would've woken up. I'll never get used to those words no matter how often we hear them. I'm super in sync with my mommy gut and always trust it.
Now for the lemons....we saw Ortho for our yearly check up. They follow Madilyn due to her Hypotonia. Hypotonia is a state of low muscle tone (the amount of tension or resistance to stretch in a muscle) often involving reduced muscle strength. Madilyn was born with this and it causes her to be "abnormally flexible". Well while the massive growth spurt has it's upside it has a huge downside too..... due to the growth spurt and the hypotonia Madilyn has developed Kyphoscoliosis. She has the s shaped curve of scoliosis in her lower spine and the hunchback curve of the kyphosis in upper spine. This can cause heart and lung issues as well as pulmonary hypertension (high blood pressure) as the curves combat each other and compress (crush) her heart and lungs. They are significant curves and her Ortho specialist wants her in a corrective wheelchair for multiple hours per day. No more high chairs, normal seats, strollers, shopping carts etc. They do not provide the appropriate support for her back. The problem is insurance and the amount of time it takes to get a custom built wheelchair. Realistically we are looking at 6 months to a year. We have to see Ortho again in September and if he does not see improvement she will be fitted for a custom back brace that will go from her hips up over her shoulders (it causes her hips to be out of place also). We will quickly work our way from 10 minutes multiple times per day up to 23 hours per day in the brace and she would wear it for 2 years or more if necessary. If the brace and wheelchair do not help they would insert a metal rod into her spine and she would have surgery every few months to adjust the rod and this is how she would "grow". Some children with kyphoscoliosis end up on oxygen also due to the compression of the heart/lungs. We are hopeful that it won't go this far since it has been caught now. I did extensive research and ordered a "chair" yesterday that will hopefully help until we can get the wheelchair.
The hardest part of the diagnosis is hearing that if we end up going the brace route in September Madilyn will lose all of the mobility we have fought so hard for. The brace is very restrictive with movement and she will have to relearn absolutely everything. She/we can do it, it's just extremely devastating to hear that we very well may end up there.
More lemons....Madilyn snores incredibly loud about 80% of the time, the other 20% it's very difficult to tell if she's even breathing. I brought this to the attention of our ENT doctor at our appointment in March and really felt like she blew it off. When we returned home from that trip I made a video of her snoring and sent it to our care coordination team to get their input. They were very concerned and forwarded it to the doctor. She called me last Friday morning herself apologizing up and down for not listening to my concerns and said Madilyn's video was alarming to her as she clearly stopped breathing in the video. While in Milwaukee they scheduled an emergency sleep study because "Madilyn's way too medically complex to assume anything" now we wait for an eternity. Actually only 7 to 10 days but it feels like an eternity to find out the results. If it's tonsils and adenoids they will remove them when she has surgery on May 18th, if it's something else we'll deal with it once we know. I'm really not able to let my mind go into the unknown because it just causes too much stress and isn't realistic at all.
Everything with Madilyn is an unknown. With her Complex X-chromosome abnormality she is one of a kind in the world and according to hundreds of years of genetic research she should not even be alive. They have no idea what to expect and are shocked and thrilled with all of the things she does, as are we. We live in the moment and deal with things one at a time...we learn to breathe all over again daily with the obstacles that her life throws at us.
Our future is unknown and sometimes quite scary but if Madilyn can keep smiling and thriving and being as happy as she is we'll continue to be thankful for every second that we get...good and bad...please keep us in your prayers for "fixable" sleep study results and that her upcoming surgery goes well as she will be under anesthesia for quite a while to have so many procedures done at once
And when you come to our lemonade stand be sure to wear a smile and little pink shoes..:)
Madilyn's Medical, Travel, and Equipment Fund
Saturday, April 25, 2015
Wednesday, February 11, 2015
up and down....over and over again
So I thought in 2013 when we heard a few times that we almost lost our sweet Peanugga that we would never have to hear that again. That we had things under control. Boy was I wrong! 2014 was full of huge developmental progress and growth and yet we still heard 4 times that "she probably would not have woken up". Those words are devastating even more so because it is solely my mommy instincts that prevented it. Sometimes there is no clear indication that something is wrong. It's just off and my gut gets this horrible feeling that something is really wrong. Thankfully all of our doctors listen to me and we've come through it okay.
The shunt revisions are horrible. Knowing that they are digging around in her brain is incredibly hard for me as one little slip could change our lives so quickly. Sugar issues are even worse. We had a scare in November, I thought it was just a coiled feeding tube as she wasn't tolerating feeds. We contacted Milwaukee and decided that we didn't need a med flight (we had already had 3 of them in 6 months) but that we would immediately head to Children's Hospital and would be a direct admit through the emergency department. Madilyn was starting to dehydrate and was tolerating zero fluids through her feeding tube ports but was otherwise acting completely fine. Imagine my surprise when they got her IV going in the ER and then checked her blood sugar and it was only 32. For those that know nothing about sugar levels 32 is organ failure and coma range. The nurse couldn't even contain her surprise as she frantically ran from our room in a panic. They said that Madilyn should have been completely lethargic and difficult to wake up (if she woke up at all) but not our little pistol. We had to mummy wrap her in a sheet and 3 of us had to hold her down to get her IV going. This causes HUGE concerns because once again she doesn't display any typical symptoms when there is a problem. During this 4 day stay we had to hear those dreaded words "for reasons unknown to us"...I get so tired of those words. They determined that Madilyn's entire GI tract just randomly stops working and they have no idea why. They've done scopes and blood work and meds repeatedly and there are no answers. Our teams of doctors are fabulous and you can tell it bothers them just as much to say it as it does for us to hear it...I can't even begin to adequately explain the way it makes me feel.
Since we came home in mid November things have been very difficult. Madilyn was supposed to have her routine eye exam under anesthesia in mid December and the doctor let us reschedule it until right after Christmas, this was a good thing as she ended up with round 1 of the croup and was on steroids and they wouldn't do anesthesia. Five days prior to the rescheduled trip she ended up with the croup again and this time it turned into pneumonia and we spent our very first overnight stay at our local hospital for observation for her breathing issues. The pneumonia/'croup diagnosis puts anesthesia off for 4 to 6 weeks due to airway narrowing. We were scheduled to go again in early February and once again failed the surgical clearance physical. Both of Madilyn's ears were infected again (5th or 6th time in 6 months) and her lungs were not yet clear, so we wait....another 6 weeks. We attempt again in March to pass the surgical clearance and pray, pray, pray that the fluid pocket on her right eye remains stable. In the meantime the ear infections have earned us another specialty to add to our list. We now have to see ENT for possible tubes when we go for our big cluster of appointments in mid April. Six appointments in 3 days plus x-rays makes for a very long week, especially since the Peanugga and I travel alone for those extended routine trips.
I always had the idea in my head that the older she got the easier this would be and I realize now that is not really the case. In some aspects it is easier, she is able to play with her toys and is mobile and is learning to talk so it helps. On the other hand it brings new struggles, she is mobile but is unable to walk on her own yet doesn't want to be held or carried so a simple thing like running into the bank or post office requires dragging a stroller everywhere because otherwise it's world war 3 as the Peanugga thinks it's perfectly acceptable to roll around the nasty floor wherever she chooses. The talking also brings about issues, she has words but not quite enough to express herself all the time which tends to lead to angry lashing out. She will grab at my face and arms and pinch or gouge at me (or whomever is closest) when she has no other way to communicate and is frustrated or overwhelmed. When we end up in seclusion when she is sick the progress we have made with transitioning in public comes completely undone. For example: Walmart used to be one of Madilyn's favorite places (even though I hate it..) and after not being anywhere we spent the entire first trip with her in tears and puking. We took her there three times last week just to have her out somewhere....I really need to find some better places to hang out..
We have now entered the world of sensory brushing and joint compression and are waiting (since November) for theratogs for Madilyn's legs. All of these things will hopefully help when she's on sensory overload or to somewhat avoid the overload to start with. I'm to the point that I'll try just about anything to attempt to make her life a little easier, for both of us.
We've had so much going on the last few months that I have not been keeping up with the blog. Sometimes I find things extremely difficult to process and I'm not sure how to share it without sounding completely negative, and I don't like negative as it gets us nowhere in life. So I will just share....the good, bad, up, down, ugly and amazing. I actually am beginning to thing that part of the problem is there is not enough pink in her purple/pink tennis shoes...maybe it's time for new pink shoes....because life is all about the little pink shoes..
The shunt revisions are horrible. Knowing that they are digging around in her brain is incredibly hard for me as one little slip could change our lives so quickly. Sugar issues are even worse. We had a scare in November, I thought it was just a coiled feeding tube as she wasn't tolerating feeds. We contacted Milwaukee and decided that we didn't need a med flight (we had already had 3 of them in 6 months) but that we would immediately head to Children's Hospital and would be a direct admit through the emergency department. Madilyn was starting to dehydrate and was tolerating zero fluids through her feeding tube ports but was otherwise acting completely fine. Imagine my surprise when they got her IV going in the ER and then checked her blood sugar and it was only 32. For those that know nothing about sugar levels 32 is organ failure and coma range. The nurse couldn't even contain her surprise as she frantically ran from our room in a panic. They said that Madilyn should have been completely lethargic and difficult to wake up (if she woke up at all) but not our little pistol. We had to mummy wrap her in a sheet and 3 of us had to hold her down to get her IV going. This causes HUGE concerns because once again she doesn't display any typical symptoms when there is a problem. During this 4 day stay we had to hear those dreaded words "for reasons unknown to us"...I get so tired of those words. They determined that Madilyn's entire GI tract just randomly stops working and they have no idea why. They've done scopes and blood work and meds repeatedly and there are no answers. Our teams of doctors are fabulous and you can tell it bothers them just as much to say it as it does for us to hear it...I can't even begin to adequately explain the way it makes me feel.
Since we came home in mid November things have been very difficult. Madilyn was supposed to have her routine eye exam under anesthesia in mid December and the doctor let us reschedule it until right after Christmas, this was a good thing as she ended up with round 1 of the croup and was on steroids and they wouldn't do anesthesia. Five days prior to the rescheduled trip she ended up with the croup again and this time it turned into pneumonia and we spent our very first overnight stay at our local hospital for observation for her breathing issues. The pneumonia/'croup diagnosis puts anesthesia off for 4 to 6 weeks due to airway narrowing. We were scheduled to go again in early February and once again failed the surgical clearance physical. Both of Madilyn's ears were infected again (5th or 6th time in 6 months) and her lungs were not yet clear, so we wait....another 6 weeks. We attempt again in March to pass the surgical clearance and pray, pray, pray that the fluid pocket on her right eye remains stable. In the meantime the ear infections have earned us another specialty to add to our list. We now have to see ENT for possible tubes when we go for our big cluster of appointments in mid April. Six appointments in 3 days plus x-rays makes for a very long week, especially since the Peanugga and I travel alone for those extended routine trips.
I always had the idea in my head that the older she got the easier this would be and I realize now that is not really the case. In some aspects it is easier, she is able to play with her toys and is mobile and is learning to talk so it helps. On the other hand it brings new struggles, she is mobile but is unable to walk on her own yet doesn't want to be held or carried so a simple thing like running into the bank or post office requires dragging a stroller everywhere because otherwise it's world war 3 as the Peanugga thinks it's perfectly acceptable to roll around the nasty floor wherever she chooses. The talking also brings about issues, she has words but not quite enough to express herself all the time which tends to lead to angry lashing out. She will grab at my face and arms and pinch or gouge at me (or whomever is closest) when she has no other way to communicate and is frustrated or overwhelmed. When we end up in seclusion when she is sick the progress we have made with transitioning in public comes completely undone. For example: Walmart used to be one of Madilyn's favorite places (even though I hate it..) and after not being anywhere we spent the entire first trip with her in tears and puking. We took her there three times last week just to have her out somewhere....I really need to find some better places to hang out..
We have now entered the world of sensory brushing and joint compression and are waiting (since November) for theratogs for Madilyn's legs. All of these things will hopefully help when she's on sensory overload or to somewhat avoid the overload to start with. I'm to the point that I'll try just about anything to attempt to make her life a little easier, for both of us.
We've had so much going on the last few months that I have not been keeping up with the blog. Sometimes I find things extremely difficult to process and I'm not sure how to share it without sounding completely negative, and I don't like negative as it gets us nowhere in life. So I will just share....the good, bad, up, down, ugly and amazing. I actually am beginning to thing that part of the problem is there is not enough pink in her purple/pink tennis shoes...maybe it's time for new pink shoes....because life is all about the little pink shoes..
Monday, October 27, 2014
Firsts, Seconds and Fears
We're in Milwaukee again. Seven appointments in three days. That's nothing new but staying at the Ronald McDonald House across the street from the hospital is. This place is incredible. It was so odd to come down here and not have to wonder where I was going to eat or what kind of construction was I going to have to deal with to get anywhere. It was also really odd to sit down to dinner in an entire huge room full of people just like me. Worried mom's, dad's and grandparents. Some were like me and had their child with them and other's are inpatient across the street. It felt really strange to be in a room full of me's. Quite often on our special needs/rare disease journey we tend to feel quite alone, but not today, today was a first.
Seconds...this is only the second time I have traveled to Milwaukee alone for appointments with Madilyn. It's too many days for anyone else to take off to accompany us, so we're flying solo this time. Thank goodness for portable DVD players, Mickey Mouse and Sophia the First, they make for a very cooperative toddler on the long car rides.
Fears...let's be real for a moment, I am full of fears when it comes to Madilyn and only for a brief second am I going to acknowledge them. One month ago Madilyn had her second shunt revision in six months. I understand shunts malfunction, they are equipment after all, it just terrifies me. It terrifies me even more when the neurosurgeon goes into your child's brain to fix the shunt and comes out saying "I hope that works cause I feel like we're missing something, things don't seem to add up". He had expressed concern with the first revision that her symptoms were not true shunt malfunction symptoms, they were brain stem related symptoms but she bounced right back after surgery and we had zero issues for six months. Then she didn't want to wake up, and when I finally got her to wake up the vomit started, the violent kind that leaves her almost non responsive for moments afterwards. The eyes, they no longer flutter from side to side when she's tired, they bounce in total opposite directions and tend to cross, it makes me hyperventilate. The balance that she fights so hard for just isn't there. I can't explain the feelings that come along with these episodes. It's pure adrenaline and prayer. Prayers that we make it in time, prayers that nothing happens on the flight, prayers that it will be "fixed" and that she'll bounce back quickly to her normal, happy self.
It took a few days this time, that did not go unnoticed by any of the neurosurgeons. I have since discovered that it may be her Posterior Fossa Cyst (her Dandy-Walker cyst) that may be the problem and not the shunted area of her brain. The Posterior Fossa Cyst is a fluid filled pouch that is where the cerebellum area of Madilyn's brain is supposed to be. I vividly recall the nurse from Special Needs pointing out the fact that the Posterior Fossa Cyst was smaller on the MRI than it was 6 months ago. It's time for me to address this with our neurosurgeon and see what he feels. I know of two little girls that passed away because of the Dandy-Walker cyst and sudden pressure changes in it and I know of one other that had to have it decompressed because of the issues it was causing. This terrifies me. Nobody ever said that this could happen, it's never been talked about and when I learned about it (from other mom's) I felt like I had been sucker punched. Of course, neurosurgery is our 7th and final appointment late Wednesday afternoon so I have lots of time to make my lists of questions for him, and lots of time to pray.
I'll update after all of her appointments are over, all I know for sure at this moment is that Madilyn is snoring very loudly next to me and it makes me giggle. I also know that after her appointments tomorrow we are coming back here to find Nugget the dog, the house mascot and therapy dog. I think we needs some pictures with him and quite possibly some new little pink shoes.
Seconds...this is only the second time I have traveled to Milwaukee alone for appointments with Madilyn. It's too many days for anyone else to take off to accompany us, so we're flying solo this time. Thank goodness for portable DVD players, Mickey Mouse and Sophia the First, they make for a very cooperative toddler on the long car rides.
Fears...let's be real for a moment, I am full of fears when it comes to Madilyn and only for a brief second am I going to acknowledge them. One month ago Madilyn had her second shunt revision in six months. I understand shunts malfunction, they are equipment after all, it just terrifies me. It terrifies me even more when the neurosurgeon goes into your child's brain to fix the shunt and comes out saying "I hope that works cause I feel like we're missing something, things don't seem to add up". He had expressed concern with the first revision that her symptoms were not true shunt malfunction symptoms, they were brain stem related symptoms but she bounced right back after surgery and we had zero issues for six months. Then she didn't want to wake up, and when I finally got her to wake up the vomit started, the violent kind that leaves her almost non responsive for moments afterwards. The eyes, they no longer flutter from side to side when she's tired, they bounce in total opposite directions and tend to cross, it makes me hyperventilate. The balance that she fights so hard for just isn't there. I can't explain the feelings that come along with these episodes. It's pure adrenaline and prayer. Prayers that we make it in time, prayers that nothing happens on the flight, prayers that it will be "fixed" and that she'll bounce back quickly to her normal, happy self.
It took a few days this time, that did not go unnoticed by any of the neurosurgeons. I have since discovered that it may be her Posterior Fossa Cyst (her Dandy-Walker cyst) that may be the problem and not the shunted area of her brain. The Posterior Fossa Cyst is a fluid filled pouch that is where the cerebellum area of Madilyn's brain is supposed to be. I vividly recall the nurse from Special Needs pointing out the fact that the Posterior Fossa Cyst was smaller on the MRI than it was 6 months ago. It's time for me to address this with our neurosurgeon and see what he feels. I know of two little girls that passed away because of the Dandy-Walker cyst and sudden pressure changes in it and I know of one other that had to have it decompressed because of the issues it was causing. This terrifies me. Nobody ever said that this could happen, it's never been talked about and when I learned about it (from other mom's) I felt like I had been sucker punched. Of course, neurosurgery is our 7th and final appointment late Wednesday afternoon so I have lots of time to make my lists of questions for him, and lots of time to pray.
I'll update after all of her appointments are over, all I know for sure at this moment is that Madilyn is snoring very loudly next to me and it makes me giggle. I also know that after her appointments tomorrow we are coming back here to find Nugget the dog, the house mascot and therapy dog. I think we needs some pictures with him and quite possibly some new little pink shoes.
Thursday, September 11, 2014
Some truth for you....(and me)...
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..
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..
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!!
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