Tuesday, January 24, 2017
We've Been Slacking
I haven't written anything for 2 months...and that's because life around the Willis household has been pretty uneventful. Savannah has battled a few episodes of illness, but nothing major. I can't remember the last time we were in Louisville, but sadly those days are coming to an end. We have one trip this Friday and then several to come in February. Friday we will meet once again with her new(er) surgeon to possibly schedule her colostomy surgery. In February we have trips to Louisville for neonatal follow up and her 24 hr EEG will finally take place after a few cancellations. We make a trip to Lexington as well for her sedated hearing test. I will keep ya posted as we find out info after each appointment.
Tuesday, November 15, 2016
on to November
Savannah's eye exam came back with the results that as of right now she is nearsighted...sometimes once premie babies can outgrow this, but if not she will be rocking some glasses too next year. I need to invent something to hold glasses, hearing aids and oxygen on a child with tiny ears...any suggestions? 😉
Heart doc was awesome! Narrowing of aorta is still present, but not restricting blood flow. Thickening of heart muscle was within normal limits today!! Hallelujah...our God is great!!!
We also got word that there is a ton of sickness going around Kosair....even in the NICU. Praying for all those children...this time of year is rough!
Heart doc was awesome! Narrowing of aorta is still present, but not restricting blood flow. Thickening of heart muscle was within normal limits today!! Hallelujah...our God is great!!!
We also got word that there is a ton of sickness going around Kosair....even in the NICU. Praying for all those children...this time of year is rough!
Sunday, October 30, 2016
october updates
Savannah had a CT of her skull per the plastic surgeon's request-he didn't see any need for surgery (he was afraid her skull bones may be closing too early). The only things he mentioned was that her frontal bone was already fused which can be fused in a typical kid her age anyway. Also, the only abnormality he saw was the orbits (eye sockets). He wants us to follow up with neurology to make sure they're not seeing anything he isn't.
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...
Sunday, October 16, 2016
october
This month has been crazy...very busy. Little miss is taking it well tho...on days when I think she will be exhausted from the previous day's doc appt she surprises me by being very active. We have seen an ENT doc in Lexington who is recommending hearing aids. However, Savannah must have a sedated hearing test in the near future to get the most accurate readings so the audiologist will know where to set the hearing aids.
We also finally met with the plastic surgeon regarding her cleft palate. To sum it up, he isn't going to repair it unless she develops speech or takes a bottle. He doesn't want to put her through a major surgery if it isn't going to benefit her.
We met with our new surgeon regarding her anoplasty surgery. This is the surgeon that, along with Jesus, saved Savannah's life post Nissen explosion. We wanted a second opinion from her since I've not always agreed with her prior surgeon on everything. This new surgeon is more realistic when it comes to PKS and what it entails for Savannah's life. We have all come to the conclusion that she will have a colostomy and if and when we decide to go for it she will have the anoplasty to fix her imperforate anus. It was the same story as with plastics...why put her through a very major surgery if it will not benefit her such as for potty training. Savannah already has difficulty healing so we figured her best option was the colostomy because it's a much easier surgery and recovery. I'm still not sure as to when this surgery will take place...the surgeon doesn't seem to be in any hurry due to the fact Savannah isn't having issues with her stools. So, we are relieved in a sense from when we left Kosairs to bring her home. We knew leaving that day she still had a very difficult road ahead of her, but for now that road is becoming easier. There are still a couple of appointments to go this month...so I will update when I'm not too busy. 😊
on a side note...please keep in prayer Savannah's PKS sister, Ava. She lives in New Zealand and is currently in the hospital fighting for her life with pneumonia...but if I've learned anything about these kiddos they are the toughest and put up the best fight!
We also finally met with the plastic surgeon regarding her cleft palate. To sum it up, he isn't going to repair it unless she develops speech or takes a bottle. He doesn't want to put her through a major surgery if it isn't going to benefit her.
We met with our new surgeon regarding her anoplasty surgery. This is the surgeon that, along with Jesus, saved Savannah's life post Nissen explosion. We wanted a second opinion from her since I've not always agreed with her prior surgeon on everything. This new surgeon is more realistic when it comes to PKS and what it entails for Savannah's life. We have all come to the conclusion that she will have a colostomy and if and when we decide to go for it she will have the anoplasty to fix her imperforate anus. It was the same story as with plastics...why put her through a very major surgery if it will not benefit her such as for potty training. Savannah already has difficulty healing so we figured her best option was the colostomy because it's a much easier surgery and recovery. I'm still not sure as to when this surgery will take place...the surgeon doesn't seem to be in any hurry due to the fact Savannah isn't having issues with her stools. So, we are relieved in a sense from when we left Kosairs to bring her home. We knew leaving that day she still had a very difficult road ahead of her, but for now that road is becoming easier. There are still a couple of appointments to go this month...so I will update when I'm not too busy. 😊
on a side note...please keep in prayer Savannah's PKS sister, Ava. She lives in New Zealand and is currently in the hospital fighting for her life with pneumonia...but if I've learned anything about these kiddos they are the toughest and put up the best fight!
Thursday, September 29, 2016
heart wrenching
The heart break just begins at diagnosis. I, of all places, received the call with my daughter's diagnosis of PKS while I was shopping for spring clothes in Wal-Mart, a day I had taken to spend time with my other kiddos. I was a blubbering mess and while I should have just put everything down, I instead proceeded to check out thinking I could keep myself together for 10 minutes....but no, I lost it on the check out lady...she thankfully didn't think of me as crazy (even tho I told her I was 😞) but gave me a much needed hug instead. Seems like looking back on it, it would have been a better conversation for the doc and family to have in person, but oh well.
What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.
I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.
Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.
What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.
I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.
Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.
Saturday, September 17, 2016
6 Months
Savannah is up to 14 lbs, 15 oz. Her 4 month shots were a little rougher on her...slight fever and very lethargic for a while. She is growing great on her growth curve. She is also getting her first tooth, but not showing much discomfort with it. And she has found her face...keeps taking her hand to her mouth or eyes.
Updates on Doc Appts:
-Neuro doesn't feel like what we are describing is seizure activity, but with her brain formation and syndrome setting her at a greater risk for seizures, she will have a 24 hr EEG coming up.
-Her pediatric surgeon discussed her next surgery to fix her imperforate anus/fistula. She would like to get it done before she's a year old. A new fact we discovered is that if there were to be complications or to initially go about the surgery the safer way, she would end up with a temporary colostomy. 😞
We are, however, getting a second opinion from the very awesome surgeon that did Savannah's emergency surgery and central line...for various reasons. We see her Oct. 7th.
-We go to UK clinic for her hearing in Oct. to hopefully get the definitive answer on that.
-Savannah started physical therapy this past week...they will be coming in twice a month initially. She loves her therapist! Speech comes in as well once a month to work on oral motor exercises to hopefully prepare her for bottles later down the road.
Updates on Doc Appts:
-Neuro doesn't feel like what we are describing is seizure activity, but with her brain formation and syndrome setting her at a greater risk for seizures, she will have a 24 hr EEG coming up.
-Her pediatric surgeon discussed her next surgery to fix her imperforate anus/fistula. She would like to get it done before she's a year old. A new fact we discovered is that if there were to be complications or to initially go about the surgery the safer way, she would end up with a temporary colostomy. 😞
We are, however, getting a second opinion from the very awesome surgeon that did Savannah's emergency surgery and central line...for various reasons. We see her Oct. 7th.
-We go to UK clinic for her hearing in Oct. to hopefully get the definitive answer on that.
-Savannah started physical therapy this past week...they will be coming in twice a month initially. She loves her therapist! Speech comes in as well once a month to work on oral motor exercises to hopefully prepare her for bottles later down the road.
Thursday, September 1, 2016
making progress
Savannah rolled onto her belly today!
-Neonatal docs tried to up her feeds to 36 mL per hour every 20 hrs so she could have a break...in order to do her therapy on a not so full stomach or should we say intestines. Well, missy wasn't having it so docs had to go back to her regular 30 mL per hour every 24 hrs. She doesn't take change very well!
-An accurate hearing test hasn't been completed with her keeping fluid on her ears so we are being sent to specialists at UK in October.
-She will have physical therapy twice a month and speech once a month with First Steps coming soon.
-She battled her first cold like a champ! Big brother brought home a cold which lasted a couple days for him & Alayna, but lasted 2 wks for Savannah.
-Neonatal docs tried to up her feeds to 36 mL per hour every 20 hrs so she could have a break...in order to do her therapy on a not so full stomach or should we say intestines. Well, missy wasn't having it so docs had to go back to her regular 30 mL per hour every 24 hrs. She doesn't take change very well!
-An accurate hearing test hasn't been completed with her keeping fluid on her ears so we are being sent to specialists at UK in October.
-She will have physical therapy twice a month and speech once a month with First Steps coming soon.
-She battled her first cold like a champ! Big brother brought home a cold which lasted a couple days for him & Alayna, but lasted 2 wks for Savannah.
Subscribe to:
Posts (Atom)