The latest on Kaetlyn - by Christine

Below with her blessing, I share a letter from Kaetlyn's mom, Christine.  The letter is beautiful and very personal.  She is living another version of my reality, It makes us "sisters." 

"Stacie, I share this with you because I do believe we are "sisters" as only those of us that share this reality can truly understand what it is to live on the edge with our children on a daily basis. I know our trials our different, but yet in many ways the same... I am always more than happy to share our experiences with others out there who may be experiencing their own challenges so they too may know that they are not alone on this journey through the life of a special needs family. Please feel free to post with my blessing... I will keep in touch and let you know for sure the final plan once we see the orthopedic; at the very least I know we will be moving forward regardless with the hysterectomy. 

Love and Miss you Guys! 

Christine"

You may recall Kaet's story as shared in these posts: 

My Life's Reality

My Fragile Child

Womanhood Hit Her Like a Ton of Bricks

Letter from Christine dated January 16, 2012

Hope this email finds your family well! 

I am writing to let you know the latest on Kaetlyn's "womanhood" issues.

Our continuing saga of womanhood that began last May...it has been a roller coaster ride to say the least as we cannot get her cycles (or should I say lack of)under control. Even using the birth-control pills that have continuous hormone for 3 months, Kaet was and is still getting her period every 2 1/2 to 3 weeks and the days leading to it are horrendous!  - The crying and screaming are enough to make me nuts and nothing seems to help. Once she actually starts we are at least blessed with a few days of relief and happiness. 

Her gynecologist ran in to us in the parking lot of the therapy center back in November to see how things have been for Kaet. It was then that I told her all we have been going through...I wanted to give the pills and her cycles a chance as I know it can take some time to regulate, so I did not call her prior to this to let her know what we have been going through. She calmly let me know that we have other options and to come see her when we had time. I finally made the appointment after getting through her latest orthopedic surgery and recovery. It' hasn't even been a month since Christmas and Kaet has had to "cycles" ! Enough is enough...

We sat down today in her office and went over everything we have been though with the irregular cycles and the fact that we had to change spasticity meds because the ones she was on (and were excellent in controlling her spasticity) had contraindications with the use of birth control pills. We discussed changing to another type of pill, but yet again wouldn't we be in the same boat was my concern; isn't it highly likely that the effectiveness of the pill was possibly inhibited by all the other Meds she is on? This according to the Dr is a valid concern. 

Our next options were surgical: Thermal ablation (burning out the lining of the uterus) with tubal ligation (typing tubes; since we know Kaet will never be having children of her own free will) or hysterectomy (only removing the uterus). We weighed the pros and cons of each carefully and decided that the hysterectomy would be the most definitive as it is possible for the lining of the uterus to grow back after thermal ablation. Please know that I have been researching and contemplating both of these already and I have to say this is a SUPER TOUGH decision to make to have your child go through yet another surgery, but is it fair for her to have to go through the pain and discomfort of a period every 2-3 weeks either?

At this point in time my mind is made up that we will proceed with the hysterectomy and for now, we are taking her off the birth control since it is ineffective anyway, and this way we can get her back on her "good" spasticity meds. I did mention to the Dr that Kaet will most likely be facing another orthopedic surgery later this year to secure the other clavicle, so she suggested and her pediatrician (we saw her today for a physical) did too that we see about coordinating the surgeries so she only has to go through it one time and be all done...that is where I leave off, we will be seeing the ortho at the beginning of Feb for her follow up from the last surgery so I will see at that time if he is willing to do it the same time as the hysterectomy. 

I sure hope and pray this all comes together and works out in the end; I hate having to make these decisions in caring for Kaets needs,  but I don't know what else to do to to get my girl comfortable...It breaks my heart either way; seeing her miserable going through the pains of cycles or going through surgery to prevent them. I feel in my heart this is the best choice and that maybe Kaet can finally stop hurting in the long run. I will keep you posted as to our progresses...

Until then, I hope you and the family stay well ...and I am praying for another LONG stretch for Riley with his seizures! :)

Christine

Dear reader, I hope you understand the challenge faced by Kaetlyn's family in an effort to do the very best they can for Kaetlyn's welfare.  As special needs parents we face dilemma's that we could never have imagined as we prepared to welcome our precious child into the world.  Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions.  We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.

We are all special... Stacie Wiesenbaugh

Neurosurgery Clinic Over for the Year

The Neurosurgery Clinic for Riley for the year is now behind us.  Dr. Storrs found little change.

The VP Shunt is either doing it's job or not functioning.  For now, we wait and should his condition dictate a revision is needed, we will take care of it then.  Now there is a plan I support.  No reason to turture Riley unless necessary.

The clinic took place at All Children's in Fort Myers.  Our PT happily changed Riley's day so we did not need to make the drive two days in a row.  Our OT provided a new hand splint to help Riley open up his left hand more.  All went smoothly, which is not the usual result of any appointment involving a doctor.

My poor 2001 Jeep Cherokee overheated on the way home.  Everything in the car is just a little tired now, but it will have to keep going just like me. The boys and I spent an hour plus in a hot Florida parking lot allowing the engine to cool before we went on home.  I was so pleased to have the appointment result in "see you next year"  that the wait did not bother me.  Riley had the lunch packed earlier and Ronan had a DS to entertain him.  Everything was as well as I could hope it to be for the moment.

Now to plan for the start of school next week.

Anyone of a special needs appointment story to share?

We are all special... by Stacie Wiesenbaugh

Appointment Summer

It does seem as if life with Riley is all about schedules and appointments.  The production of planning, getting through the next activity and arriving at the right place and time, in the reasonable mindset, wear us out.  I find myself procrastinating with each line on my list for the day and admittedly some of the lines are left unmarked.

Riley's schedule is packed as Summer ends very soon as Lee County returns to school on August 8.  The boys and I have spent a lot of time traveling and hanging out in waiting rooms.  These events wear my patience thin with the various people we encounter.  It takes a great amount of energy simply to show up somewhere with Riley that finding us easily disrespected vexes me (See April Fools in a Doctors Office or My Fragile Child).

The neurologist clinic appointment had been canceled on us and rescheduled to a later date and time without consultation.  I had asked for a time change if possible to an earlier hour and was told Riley could be seen at 8:20 am.  We arrived with moments to spare and watched three ambulatory patients arrive after us and leave before we were called.  I questioned the nurse on one of her pass through's to make sure she was aware Riley was available, she assured me she did.  At 9:20 am we were finally called back for the same nurse to take our stats.  Unhappily, I paused at the scheduling desk reminding the woman behind the computer of our allotted time.  Only then did she notice, but did not care, that we had been booked at 8:20 at the same time as another patient.  My voice raised and our Neurologist rescued her by dispensing with our stats and seeing Riley immediately.  The doctor has no fault in this and I immediately felt guilty for complaining.  Dr. Osterman has been nothing but kind, considerate and gentle with us.  However, this treatment by office staff has become all too common everywhere we go.  Do some see a child in a wheelchair and feel that child's time is somehow of less value... he will not complain, he does not have a playdate planned and mom is simply a state at home mom with no value to society.

The week continues with lots of unreturned phone calls and planning to finally schedule a Neurosurgery appointment for this coming Monday.  A CT and shunt series at a radiology office.  The dreaded Ophthalmology has been delayed until Fall.  All of it adding to the stress of going through these motions to keep all parties placated in the oversight of Riley's care.

Wednesday found us at the dental school, for both boys for teeth cleaning.  The school has been a wonderful way to care for Riley's needs.  The young dentists are undeterred by the special needs challenge and interested in his health as opposed to some of the long-term professionals we have tried in the past.  Hopefully no one is offended by my summing them up so disinterested in Riley, I spent my early years of work in my fathers' Oral and Maxillofacial Surgery Office and learned the importance of respecting the patient through observing my Dad over the years.   I maintain a "cheat sheet" of important information which I have shared with every medical office Riley enters.  There are no secrets to Riley's condition.   Upon being called back for our appointment, a previously unknown Sergeant had a copy of Riley's cheat sheet up on the screen for review.  "Any changes to his condition?," she demanded.  "No, pretty much the same," was my answer.  Then I added, "he seized on Sunday."  This met with a reprimand that they must know everything right up front and she began to argue with me.  We had only just begun the conversation.  Here she was with full-disclosure right in front of her and she wants to yell at me.  She started to go down the road that he could not even be seen that day having had a recent seizure.  I was taken aback.  Perhaps special needs do not have the right to full care, it is simply too risky for medical professionals to work with them?  Maybe she does not comprehend special needs or the explanation of "seizure disorder" that I had put directly in front of her. Before the confrontation escalated, a familiar face appeared, Dr. Magher, Riley's first dentist in that office before she graduated.  She had returned to be one of the leads in the office and she was a very welcome and reassuring presence.  The Sergeants' concerns were left behind and Riley received his x-rays and cleaning which he tolerated beautifully.

Some of my frustration with all these appointments is due simply to navigating everyone we encounter.  So frequently, people block our path, quickening their step to be ahead of us or allowing children to stare to the point of causing us discomfort.  There are individuals who cross our path with consideration.  Those of you who do this, I notice and I remember  and appreciate your gesture no matter how humble.  I remember the tall and handsome twenty-something Asian man tripping over his own feet when Ronan reached the door of McDonald's off Daniels before him.  He could not help, but the intention is enough for me.  I remember the sixty-something gentleman passing by during the wheelchair unloading at NDIC asking how he could assist, this is a procedure that is difficult to explain, but the desire to help warmed my heart.  Those small moments are few and far between, but they stay with me.

Robert, Burt, Heidi and Pick A Spot bring Riley around to pose for the camera.

Ronan waits patiently.  Note: both boys have added to their tie dye collection.

Thursday brought us back to Naples Equestrian Challenge for Riley's lesson.  Currently, there are plenty of volunteers, likely this is thanks to the high-schooler's fitting in their community service hours over the summer which gave me the chance to snap some shots of Riley aboard Pick A Spot.

 Taking a moment from the barn, volunteers rest in the sliver of shade. July 28, 2011 4:30 pm.

 

Better go now and do some more planning.

Anyone else out there have appointment stories to share? I thank you for stopping by.

We are all special... by Stacie Wiesenbaugh

Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gatherered already she now has some added issues to deal with lately.  I greatly appreciate Christine's willingness to share their past couple of weeks.  Stacie

It has been a crazy month...(some of the days/times run together in my mind, but I'll do my best to explain). Kaetlyn's journey into womanhood...

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out "normal," but we decided to start her on birth control to help with the hormones....

About one week later we were AGAIN at a loss of the extreme "behaviors" we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her :(  By this time, I was at my whits end...I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinanalysis and strangely decided to do a STREP test. We started with the STREP test and while it was "processing" drew the blood work...before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it....POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! ...

2 days later I get a call from the teacher that Kaet had a GREAT day :), but my "little girl" had become a "little woman" YEP, the birth control/hormones had apparently given her the "push" to start her period. That wasn't too bad that weekend we took it easy and stayed close to home since I had no clue what to expect....then came Monday. 

I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space....the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! :( It was like something was inside her nagging and irritating her...

The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet's gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results...before the Doctor even walked into the room I could hear her outside the door saying, "I would be in pain if I had that!" - apparently she was speaking to an intern. She came into the room and explained to me that Kaet had "free fluid" in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! ...there was no way I could go through a couple weeks of what I experienced the day prior!!!! 

Kaetlyn above with her mom, Christine, graduates 8th grade last week.

She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 

Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can't talk to me I felt it best to go on...

We started yet again with the blood test and urine test (what an "adventure" it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn't give it to her that way. feeding tube time! (NOT) I didn't have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn's :( I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and "surprise" lots of fecal matter too. 

Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 

Christine