The results are in....

We had a loooonnnnng conference with the pediatric neurosurgeon today who explained from head to toe, beginning to end, how tethered cord syndrome manifests itself. He started at embryonic development and ended sometime in adulthood. He reviewed all of the views that currently exist from aggressive surgical repair to wait and see if there is a problem to a mix of both (which is where his opinion lies).

For Cintia, her MRI appears to give us the ability to wait and not cause undue harm for at least the next couple of years . The next couple of years is important and what we needed to feel comfortable returning to Guatemala in October. Worse case should be a couple of years to complete an adoption. It shouldn't take that long but it could. There are several reasons he thinks we can wait, some of which are subjective and cloudy due to her congenital problems (for those who don't know what that means, it means problems she had at birth that occured when something went wrong during embryonic development). Amazingly, God takes two halves of one cell, puts them together, and makes a human being in 38 weeks time (give or take a few). For all of us pro-lifers, we know that in the first 2 months, a small complete human exists that needs only to grow and develop in Mommy until he/she is big enough to live outside of Mommy in our great big world.

Cintia had a time during her fetal development (somewhere between the 5th & 7th week ) when things went wrong. At the same time her colorectal and reproductive organs were forming, so were her spinal cord and neurological connections to her extremities. She had the obvious defect we knew about and more that we could not see. The lipoma at the base of her spinal cord is not normal. It is a manifestation of tethered cord syndrome and is a common presentation for kids with imperforate anus. At birth and in the early years, a lipoma like Cintia's should not cause problems. It should not cause problems until she has significant growth (normally just prior to adolescence...although it can happen earlier). The first major sign is urinary incontinence. He feels Cintia already has a 25-30% chance of urinary incontinence based on her other problems (imp. anus). Also, he informed us that many kids have neurological deficit like Cintia who were born with imp. anus but not the spinal cord lipoma. Cintia's neurological symptoms may be from the spinal lipoma or could be from other causes (or a combination of both). Is the cord lipoma presenting early symptoms or are her symptoms from peripheral neurological deficit that she was born with? (Peripheral meaning that the nerves to her legs, arms, bladder, intestines, and such are not working right due to being formed wrong when she was an embryo.) He did not mention that it could be cerebral palsy. However, it is a consideration as well according to her neurologist. Unfortunately, we know nothing about Cintia's birth and probably never will.

According to him, there are 4 points to consider....3 of which she has some degree of. The first is urinary incontinence....too early to tell for sure but she does show signs of it. Too early means don't operate until we know. She is simply too young and has had major surgical reconstruction in the area that needs time to heal. We are only one year post op. The next is sensory issues....back pain particularly when sitting for long periods of time which she definitely has. However, she has had major repair down low and has plenty of reason to have pain...but most likely that is the lipoma. The other sensory sign would show a change in the level/location of the end of her spinal cord and/or fluid build-up in the canal around her spinal cord. For now, on the MRI, that appears normal for Cintia. As she grows, that may change due to the cord being bound by the lipoma and not able to ascend into the canal during normal bony growth. The normal level of the end of the varies with every person...but all signs now on the MRI say that waiting is not going to harm Cintia...hers is normal enough to buy us time. The next sign is motor/gait problems that worsen over time. We feel that they have although it could simply be her growth and the fact that she has to adjust to it. That means that since she has grown a lot in the last year the neurological deficit that she was born with are more evident but not necessarily worse. That is a tough one to judge. This is a "which came first, the chicken or the egg" kind of issue. We truly don't know. The last sign is scoliosis. He says her spine is straight...her neurologist says it is not. However, the degree that it is curved is still too small to risk surgery at this time.

All of this said, he recommends waiting for surgery for a couple of years. Unless she improves and we feel waiting is indicated until symptoms justify the risk, we will take that advice. The risk of any further deficit for her considering she already has compounding physical issues from the imp. anus and repair would not be in her best long term interest. The part of us that wants to do the surgery now to give her the best possibility of a good outcome does not want to risk surgery until we have to/need to. All surgery has risk and spinal cord surgery has plenty. However, this surgeon feels comfortable that he can do the surgery with reasonable risk. Waiting 2 years or until we get her back here should not cause her anymore harm. The growth or her spinal cord and bony vertebrae should be in sync enough to not cause significant stretching in that amount of time. At some point, closer to adolescence, her bony vertebrae will grow faster than the spinal cord. At that point, the risk is much greater and her cord could stay bound and stretch instead of rising into the vertebral column. That would cause nerve damage. We want to get it released by surgery before that time since she is already symptomatic. Does she have stretch that can't be seen on the MRI now? Possibly, since the level of the cord varies for everyone. Again, the MRI told him that we are still in the safe zone based on her spinal cord level even given that possibility. The progression is slow enough that we can still wait.

I know this is confusing but it was very good to have someone spend that amount of time with us. He gave us an anatomy lesson and a professional opinion...taking great time to do so. We both feel comfortable letting him do the surgery when we get home with Cintia. We both feel better knowing that we have not harmed her by waiting this long...honestly we were worried we had. Funny how having no health insurance affects how you think and how hospitals and providers think. With insurance, she would have been tested when we got her. Apparently, even with an earlier diagnosis, waiting would have been acceptable and probably advisable.

As for the visa issue, this will not be our ticket home. However, Cintia's well being is okay and we rejoice in that. If God wants us to bring her home in October, He will get the visa for us another way. If He has other plans in mind, we will go where He wants us. God is good and we trust that our plans don't compare with His. He will take us on a grand adventure either way. No worries....just faith. Grandparents....relax. Everything will work out perfectly.

Next update I will share the news from Guatemala and a picture of some of Cintia's best fellows!

Blessings!
April

Finally....an update

I have lots to update but no time....we are going camping and loading now! I will try to update while we are camping....yes there is wi-fi at the campground. Don't think for a minute that I am going to "rough it" and really camp.

Except for ongoing sickness on my part (can't seem to get through one illness without getting another), we are fine. God has given my family the gift of me with no voice due to bronchitis. That is probably a good thing....I can't yell at anybody. Funny thing is that everybody whispers to me too...I guess it is a normal reaction.

Attorney gave a good update last week and I will share that later. We have an appointment with a neurosurgeon in Knoxville tomorrow. We will leave from the campground and drive to Knoxville. It is almost an hour closer to Knoxville than our house...so that is a good thing. He is working us in on a day he is not normally in the office. I really liked him on the phone. He is very personable and a good communicator which is not common for neurosurgeons and neurologists according to Kenny. Most have peculiar personalities...probably deep thinkers considering the field they are in. Anyway, I really feel good about him. He is not surgery happy but wants to lay hands on Cintia before deciding whether she needs surgery right now or whether we can wait. She does seem to be worsening to Kenny and I. She is really dragging her left foot...both drag but it is worse than the right. Maybe it is more noticeable because she is 3 1/2 months from being 3 years old and it is so noticeable compared to other kids her age that something is wrong. The fellow at the Stride Rite shoe store who has been fitting kids for shoes for at least 20 years noticed in 5 steps that she was toe walking. I think she teeters more than toes walks but I don't have the experience to call it. Uneven surfaces and door thresholds are the hardest thing for her. I will let you know how the appointment goes.

Gotta go...our glass patio table just shattered with Payton under it while she & Chase were trying to put the umbrella back in the table. They are alive with a few cuts. I stuck them in the shower (seperately of course) and told them not to rub. Now I will go deglass the heads of my children and clean up my backyard. So are the days of our lives!

Blessings!
April

Medical Update

Cintia's neurologist finally called yesterday and is referring Cintia to a neurosurgeon. The MRI was done in early May so it was about time! I graciously declined a consult in Chattanooga. Erlanger is not a missions based hospital so honestly we cannot afford to do it here. Honestly, my favorite hospital in the world is East Tennessee Children's Hospital. They are well staffed and work very hard to take the best care of their little patients. Kenny agrees.....once we have Cintia insured, we will still give our business to ETCH. They have a pediatric neurosurgeon who is in the same building as Dr. Angel. We got a thumbs up recommendation from Kevin who said all of the surgeons at East Tennessee Pediatric Surgery Group like him. So....next week, we will work on scheduling a consult.

Blessings!
April

I ready to go swimmin'!!!!!!

Self-dressed and ready to go! As you can tell, this girl is always on the go! She doesn't miss a thing!!!

Quick Update

Baby update: Veronica (McKenna's half sister) has had a check-up & ultrasound and is now scheduled to have a c-section this week. We will update with baby news when we have it.

News from Guatemala: another judge (apparently the one over minor's court) has told our attorney that he is well aware of Cintia's situation and they will do nothing to put her at risk or in harm's way. What does that mean? Prayerfully, it means we will get to keep her...as in legal temporal custody of her (temporary until the adoption completes). I think if we have a way to bring her back out they will let us. However, we may not be able to. The visa will be one issue and the adoption the other. We need to procede with the adoption and if that can't happen with her out of the country, then we will stay in the country. The other news we received was that an in-country adoption requires permanent residency (2 years to get it). We are now waiting to hear from our attorney once he meets with the central authority (organizaiton that is in charge of adoptions). He will ask again what our options are to proceed with an adoption once we get through the hearing in October. If they say the only way is an in-country adoption, we will make the move in August. If they say that they will try to grandfather her in based on special needs and procede as a special case international adoption, we will do that either fostoring in Guatemala or here based on what they allow. If they won't say anything yet, we wait and go in October when it will all unfold. Still a mess from our perspective but God has it all under control. Just looking at her visa extension with a date of expiration of October 9, 2009 when our hearing is at 9:30 on the October 8, 2009 absolutely cracks me up! God has a sense of humor and just wanted to remind us that He is very aware of the details and He has it all under control. He gives us just what we need.

Good news from the school situation: SBA (our private school in Chattanooga) will not require us to forfeit 50% of our tuition. Since we would be moving more than 50 miles away, we would only pay for the time we are here. So....for now we plan to put the kids in school in Chattanooga in August and continue living our lives here until the plan changes. As you know, it could change next week...heck, it could change in 15 minutes!

Blessings!
April

Sorry!

Sorry for the lack of updates but I do have good reasons. Beyond the obvious that I am physically, emotionally, and in almost every way I can currently think of....DRAINED!!!!!, I have literally been surviving. I arrived home late Tuesday night (last week) after a rough flight (thought we were crashing as did everyone else on the plane...but obviously we did not). Wednesday, we were at church all day for rehearsal and set prep for our Extreme Sing musical..Heaven's Kitchen. Thanks Deborah! She & I (and our poor children) have been at church every spare minute for weeks preparing. We worked all week with more rehearsals on Friday...not leaving church until 7:00 that night. We celebrated McKenna's 7th Bday on Saturday at Lake Winnie...(Happy Birthday sweetheart!). We were back at church Sunday morning from 8:30 in the morning until after 8:00 that evening for our performances and the musical in the evening service (pictures will come later). We transformed our stage into heaven and it was perfect! Monday, we got Casey off to camp, met with Deborah to take down the set, took McKenna to gymnastics for 3 hours, squeezed in a dinner to celebrate 18 yrs. of marriage for Kenny and I, picked McKenna up, went home, and crashed. On Tuesday, my body crashed. I became very ill with something (flu, infection, pig flu....who knows!). I thought I would die that night and it did not go away. My children have tended one another all week since dad is working every day and I am not yet back to the land of the living. I am trying very hard not to spread my germs but you know that can be impossible. Pray everyone else stays well. For now, I am praying I can pack Payton & Chase tomorrow for camp. They leave Sunday with Kenny (who is camp doc) and will be gone until Thursday. I haven't felt this "At the end of my rope!" in a long time. Honestly, I need a hole to bury myself in for a while. The stress of the Guatemala nightmare, the stress of the US immigration nightmare in regards to Cintia, the stress of the possibility of losing her to a system that would swallow her up, juggling 6 kids and a schedule that is impossible to keep up with if I were 5 people instead of the one person that I am, medical issues with Cintia, legal documents and reports requiring lots of thought and a well body to compose, school here or in Guate major issues and documents to prepare, closing down school from this year...I homeschooled 4 this year, the stress and issues caused from the lack of information flowing from Guatemalan attorneys and courts, plus all of the daily life in the Hayman household of 8 and multiple critters....I am exhausted and need to disappear for a while! Ugh!! I am tried even typing my life. Pray for rest for the weary and a healthy body to move forward....next update, I'll be back to my upbeat self. Right now....I need to lay down...

Blessings!
April

It's official....I am crazy!

Let's all pray that the picture of a girl and a tree that I had to draw did not indicate that I had completely lost my mind.

I liked the social worker better than the shrink, but I think it went okay. For the very first time, I cried during an interview. I didn't mean to...it was not expected...and I did not boo hoo. Why did I cry? She asked me at the end of the interview whether we wanted to continue to take care of Cintia. I teared up and said, "For the rest of her life....she has been our daughter for 14 months and we could not imagine our lives without her. We will come to Guatemala to take care of her if we need to...but we want to be the ones who take care of her forever." Then she asked me to draw a picture of a girl and a tree. The last question was, "How old is the girl you drew?" I said 17????" That was it.

Prior to my interview, I received a call from my friend Marisol. She is our contact for Norma, McKenna's birthmom. McKenna's half sister, Veronica, is due with her first baby. She and Norma had a fight and she left with her boyfriend/husband a few months ago (don't know if they have gotten married legally or just common law). Veronica is a difficult girl...not personable like her mom & McKenna...and does not get along with her in-laws either. Apparently, in the last few days, Veronica's boyfriend/husband killed someone and took off to hide. Veronica was scared that the family of the victim would come hunting her so she went to Norma. Norma took her to the doctor since her baby is already due. The baby is not turned right and she needs a c-section. Norma wanted to know if we could help. She doesn't even know that I am here....it is just amazing how God's timing works out. I am trying to arrange to pay for the c-section. Here it is around $500-600 which is more than they could afford. We will arrange to pay the hospital through a contact instead of wiring money to Norma. Anyway, pray for safety for McKenna's birth family and her 1st neice or nephew. We would never deny help to this family that gave us our daughter. Norma is a wonderful person and she never asks for something unless she needs it.

Well, now I am going to visit the school (it all worked out) and then to look for housing. More later!

Blessings!
April