Thursday, September 17, 2009
Wednesday, September 9, 2009
Last week I played telephone tag with 3 of Mantha's doctors. After 3 days, it was determined that, although a marked change in sodium could cause seizures, Mantha's sodium level had not changed and therefor was not causing the seizures.
Her neurologist increased Mantha's medication by .5 cc's twice a day. That's the largest increase in meds she has ever had. We had to watch her over the long weekend and call the neurologist's office on Wednesday 09/09/09 (yes that's today and I had to sneak writing that in there again).
I watched her "like a hawk" and had her sisters and father watching closely as well. The "blankness" and "spacey" episodes stopped. Her vocabulary became complex again. I hadn't even really put together that she wasn't talking as much. She was *engaged* again with us at meals and during her school.
So for now, we stick with the increased medication and see the doctor for a follow up next month.
Saturday, August 29, 2009
Thursday, April 30, 2009
Today Mantha had her routine follow-up cardiology appointment. She sees the cardiologist every six months. She gets an EKG and an echocardiogram at those appointments and today was no exception. A routine appointment takes about 2 hours. One thing that was somewhat important but some may think is routine is she pulled off all the 'sticky' leads after they finished the EKG. It was good therapy!
She *loves* going to the doctor. Any time we mention going to the doctor, she gets excited and keeps asking every day if it's the day to go to the doctor. She's become and expert at lying still for the EKG and she looks forward to the echocardiogram. That part is easy to understand. She gets to watch a video while the technician does the echo. The technician commented on how well she was doing being still while she did the echo.
John was with Mantha today. He usually takes her to the cardiologist or we all go. (Last time we all went and made it a field trip. The other girls got see the EKG and the Echo and got to ask questions). John said that Dr. S came in after reviewing all the tests (EKG, echo, and his own examination) shaking his head. The first words out of his mouth were 'I just can't explain it. When I see the tricuspid insufficiency on the echo, and I listen to her... But she's fine'.
Thursday, April 23, 2009
Here's a picture of Mantha's band aid for her 'boo boo'. When she was getting the blood drawn she kept saying 'it tickles' (she says that instead of 'it hurts'), but towards the end she admitted it hurt. She was very good about the whole process, better than me!
Wednesday, April 22, 2009
Today was the day of the appointment with Dr. G. John had to take her because I have no voice. We would have preferred both of us taking her but I am thankful that my sweet honeybear was willing and able to do it.
First some GREAT news. Dr. G confirmed that although Mantha is well below the 5 percentile (she's well below the chart period!) she does have a nice growth curve and he seemed pleased with her growth curve. He discussed with John some things that can interfere with starting puberty or cause puberty to be delayed.
Dr. G also confirmed that some previous blood work was all "normal" but did order 4 more blood tests to make sure all was functioning as it should. He also ordered a "bone age" which is a scan or x-ray of the hand to determine how old the body thinks it is.
Surprisingly, we had the results back within 8 hours! Her blood work was all fine and normal, but her bone age appears to be at least three years younger than her chronological age. This news, on the surface, may appear to be bad news but it really is good news! Because her body thinks it is younger than it is, it means she has several more years to grow! Dr. G said this was very good for her height projection. (She will still be quite petite but I was afraid she might not reach 4 ft but she may even reach 4 1/2 feet.)
So she is just developmentally delayed. I can live with that. John can live with that. What does that mean? It means that everything appears to be working the way it should work, but it is taking longer to get there. This shouldn't be surprising at all; this was the child who didn't get her first tooth until she was 19 months old and it was a molar! A molar!! She is so not typical!
And my lesson? I am once again in awe of the miracle of life and God's handiwork. Mantha is fearfully and wonderfully made. Because she is so mentally delayed, it is good that she is physically delayed. God is Good. His timing is perfect.
Saturday, April 4, 2009
We left off where my wife was recalling where, although we were told we were only having one child, it felt to her that it was two or 'an olympic swimmer.' So she goes to her ultrasound appointment without me, as I was tied up in an exercise and I couldn't get the time to take her. No big deal, as it was a routine ultrasound and there was nothing to indicate any issues. As I was working, some of my coworkers were starting to come up to me asking 'did you talk to your wife?' Now this was odd, as it was in the days before cell phones were ubiquitous, and when people are asking if you talked to your wife it can't be good. So finally my commander comes up to me and informs me my wife is waiting outside the building we were in. I go down, and my wife holds up an ultrasound picture saying 'baby a, baby b'. I immediately doubled over in shock, as that was the last thing on my mind.
Once I got over the shock, I grew to enjoy the concept of having two at once. We even announced it in church the Sunday after we found out, complete with some audible gasps. Going out and purchasing two of things: carseats, clothes, hats, and so forth. Having the two carseats sitting together on our coffee table one day really hit the point home about twins.
I wish I could say that the rest of the pregnancy was uneventful, but it wasn't. As the pregnancy progressed, complications ensued. Primarily pre-term labor/contractions. They started in late June, and proceeded to put my wife on bedrest, with a variety of medications. She broke through terbutalene, and then magnesium. I remember a number of occasions where, immediately after work, I would go to the local German 'chicken man' to get roasted chickens and french fries, since I really didn't have time to cook.
Finally, in August, we went in to the emergency room, because my wife seemed to be having issues with a bladder infection. The infection started triggering contractions, and labor was beginning. The hospital decided not to stop it since we were at 34 weeks gestation. Since the hospital we were at couldn't handle 34 week children (wasn't equipped), they moved us to a German Frauenklinik. After the labor slowed a little bit, it picked up again. Finally at 12:34 pm Mantha was born, she came out despite the midwife (Germans are nice in the fact that they rely on midwives for deliveries and keep the doctors out except for emergencies. We only saw the doctor twice and he barely poked his head in the room and asked 'how are you doing?' each time) telling my wife to stop pushing. Her twin was born 18 minutes later (it took that long because they had to maneuver her arm out of the way so it wasn't on top of her head). Her twin was immediately taken out because she seemed to 'have trouble breathing'. We were relieved and concerned at the same time. We had two new daughters, but one had 'medical issues'. We were completely fooled about which child had medical issues, and how serious they were.....
to be continued.
Tuesday, March 24, 2009
Mantha loves birthdays. She gets just as excited for someone else's birthday as she does for her own. She keeps track of time by birthdays. She knows the order of the birthdays. First birthday of the year is Tailor's, then Mother's Day (not a birthday but a marker she uses) followed by BooBear's birthday and Father's Day. Fourth of July helps break up the waiting and at long last Mantha and her twin celebrate her birthday. Poor Daddy. There isn't much time for Mantha to get overly excited about Daddy's birthday as his birthday is just a week after the twins', but she does love to tell him Happy Birthday on his day. Mommy's birthday is last. (Reformation Day, Thanksgiving, Christmas and New Year's help break up the long six months until Tailor's birthday comes round again).
Birthdays have always been special to me but after Mantha was born, they became even more of a reason to celebrate. Each birthday is a chance to celebrate life. It's a chance to thank God and remember how He blessed us with another year. We were told that Mantha only had a 50% chance of surviving the first open heart surgery. We were told that Mantha had about a 50% chance of living to age 5. No one knows what her life expectancy is. Her official prognosis is "unknown". We've learned how precious life is. She's taught us to appreciate the time we have with ALL of our daughters.
I am grateful and thankful that the Lord blessed us with Tailor and that we've had the privilege of having her in our lives for 10 years. We pray that His hand will continue to be on her and that He will bless her with many many more years.
Thursday, March 19, 2009
Here is what I did:
I brought my Extra Virgin Olive Oil to room temperature. When it was liquid, I poured 3 tablespoons into a small sauce pan to which I added 3 tablespoons Extra Virgin Coconut Oil and 3 tablespoons chopped fresh garlic. When the coconut oil was melted, I poured the mixture into my Vitamix and processed it for a minute or so to infuse the three things together. I poured into a small bowl (like a rubbermaid container) with a lid and put it in the fridge. After several hours it is now more of a hard salve that can be rubbed or spread as needed. I found that it melts very easily as you apply it to little feet. Oh and the recipe says to strain the bits of garlic but I didn't. And it supposedly lasts for two weeks.
Here is the link my friend sent me Walking Therein: GOOT
BooBear and Tailor have tried GOOT and both tell me "I don't like how it feels on my feet and the stuff is stinky but I really like how much better I feel this morning"
I think the key is applying it at the first signs of a cold. Do check out the link if you are interested in the GOOT. There more links on the that page about GOOT. If you try it, let me know how it works for you.
Monday, March 16, 2009
A friend of mine (Hi Jacqueline!) sent me an email with a link to a recipe for GOOT. I don't know what (if anything) Goot stands for but I can tell you what's in it. Extra Virgin Olive Oil, Extra Virgin Coconut Oil and fresh chopped garlic. I mixed this up and rubbed it on Mantha's little feet, put socks on those feet and in the morning Mantha has been better. She is recovering so much faster with a lot less congestion!
Today she's had a little bit of a runny nose but was able to do Physical Therapy. She did get quite worn out from PT and took a nice little nap this afternoon. She also nearly fell asleep during our family read aloud time tonight but her cough is nearly non-existent.
And we haven't had anymore seizures! Ok so it's only been a few days. Getting sick back to back could have been a seizure trigger so I'm thrilled that we did not have that repeat experience with this go round.
Wednesday, March 11, 2009
Today’s been a rough day. I’m not sure how to express it really. Perhaps it’s just the timing? Mantha’s been sick the last few days. She caught the same virus the rest of us have had. She had me a bit worried on Saturday night when, in addition to being hit head on with the virus, she had one of her seizure episodes. Nobody saw the actual seizure (we rarely do!) but the aftermath is always scary for me. We play the waiting game. Her eyes get dilated, she loses all color in her face and she becomes extremely sleepy. We believe that being overtired, losing a tooth and especially being sick contributed to this seizure episode.
It didn’t take her very long to recover (that’s a good thing) and she already had a routine appointment set up with her neurologist. But this seizure was the second in 4 months. It seems like the seizures are breaking through more often. And these are just the ones we notice, and are not necessarily the ones that we don’t see.
Today was the routine appointment. I had an unsettled feeling in my spirit. I couldn’t stop thinking about us having an accident on the way to the appointment. I prayed frequently this morning and in the van. We did not have an accident but there was trouble on the hwy. The HWY that we need to take was closed at the exit one exit past where we need to exit. It was closed due to an “emergency fire”. That meant traffic was backed up. Horribly backed up. It took 20 minutes to get from the Interstate to the HWY exit. It should take 3-5 minutes! By God’s grace we were only 10 minutes or so late for the appointment. I would have called ahead but (remember I said it was a rough day) my cell phone was *dead*. The doctor’s office was understanding and we were still able to see the doctor.
The girls were in the room with us. I know they heard the conversation but I don’t think they really heard it. I’m glad. Though I did hear it, it took me several hours to process it.
Mantha has maxed out the current medication. Her blood level indicates that it is the right range for her weight. Because we suspect that overtiredness due to excitement is a trigger factor and because it was only two seizures 3 months apart she was hesitant to change medications. We may have to consider adding another medication .
But the hard part. The rough part. Just a few simple words towards the end of the appointment. The doctor was filling out the paper that we take to the receptionist for setting up whatever we need and/or the next appointment. She said, “We can’t talk about being seizure free.” Seizure free. 1 ½ years ago we came really close to being able to talk about seizure free. We had gone 8 or 9 months with no seizures. The doctor said that if she could go one year without seizures, we would start weaning her off the meds. Now, we’re averaging one to two seizures in a four month period.
I know things could be worse.This is really such a small thing in the big scheme of things.And if I am truly honest, today wasn’t nearly as rough as it could have been. I kept feeling the tug to pray. I believe the “unsettling feeling” came from the Lord so that I would lean on Him.I remember setting down the dead cell phone and praying that I would not need it and realized that I would have to be dependent on the Lord and the thought even crossed my mind that I was stepping out in faith and why should it be so hard. People did this all the time before cell phones were invented!
I didn’t realize what an emotional day this had been for me until after dinner.The girls were listening to a CD of hymns while they cleaned up the kitchen.I heard snatches of “How Firm a Foundation” and I just started to cry.It was in that moment, hearing the words to that hymn that I realized I was leaning on my Foundation today and He “upheld me in His Hand” and he “did not forsake me”.He gave me the grace that I needed to deal with bad traffic, grumpy drivers, backed up traffic and facing again the reality that my daughter is different.But it’s all good.He’s good.He’s my rock and my strength and fortress.He’s my firm foundation and He has designed even this dross of her seizure disorder to refine us.Once again we are living in the truth of Romans 8:28.We have clung to that verse through open heart surgeries and we continue to cling to that verse in the “little things."Here is a link to the hymn if you are unfamiliar with it:
How Firm a Foundation
Saturday, March 7, 2009
Today. March 7th, we ate ice cream for breakfast because Give Kids the World Village sent out an email encouraging families who have stayed at GKTWV to join in celebrating Founders Day. According to the email, the tradition of eating ice cream for breakfast started 4 years ago.
We chose to go all out and had three different flavors (chocolate, vanilla and peanut butter overload!), whipped cream, cherries, mini-chocolate chips, chocolate sauce and butterscotch. Each person choose their ice cream and toppings.
Ok, Hand, what do you think we should do?
Saturday, February 28, 2009
First, before the details of the big milestone some background to help explain *why* this such a big deal of us.
Last week Mantha finished up the Beginnings level of Mathematical Reasoning. I’ve had the next level since last June when I picked it up at a home school convention. When I purchased that level, I was very hesitant that she would be able to use it as written as it starts off with tracing numbers. I just planned on skipping the pages that required her to trace numbers.
We’ve been working on her fine motor skills quite a bit. She has a strong desire to learn to write but she did not have the skills do so. Amazing how I took for granted the ability to *TRACE*. So we’ve been using a Kumon workbook called “My First Book of Tracing”. It looks like a book of mazes. Her job is to follow the path from one point to the next without leaving the path. She has enjoyed this book and it has helped her develop the motor skills she needs.
All that work with the tracing book has prepared her to begin tracing letters and numbers that have dashed lines. So we started the new “Purple” workbook this week. Because several of the first pages are learning to write numbers I only scheduled 1 page per day and I scheduled us to also do 1 page of MUS a day. Neither page has very many problems. We did this Monday through Wednesday. On Thursday I was very tired. I chose not to “do school” with Mantha. She however, was determined to do school. She pulled the purple workbook of the shelf and sought help from BooBear. She did one page of tracing 5 and 6 with her sister sitting with her.
So up to this point, Samantha has never truly, truly been independent with her school work. Yes, she done pages with next to no help but always required someone to explain the page to her and to sit near her. Over the last few weeks we’ve been getting a bit more independent. Mom will explain the page, watch her do one to make sure she understands and then get up from the table to do something else (but still be in the area). Mostly this has been with the above mentioned tracing book and with her Building Thinking Skills Primary book also from Critical Thinking Press.
Now yesterday she crossed that most necessary bridge. The bridge that we often take for granted with our typically developing healthy children: the bridge of independence. While I was on the phone, and her sisters were otherwise occupied, Mantha pulled the “purple math book” (that’s her name for it) off the shelf. Found the page where she had left off and proceeded to do 4 pages of math. These pages were different from we had been doing but just looking at them she could figure out what she needed to do. The first page required her to trace the numbers 1 through 5 and then match those numbers to a picture with the correct number of objects. The next three pages had three problems each on them. Each problem had a picture of a certain number of animals or objects and three number choices below. She needed to trace the numbers and then circle the correct the number.
We have been working for such an incredibly long time on number concepts. It is indescribable to be able to see that it finally clicked and to see that her motor skills have gotten to the point that she CAN trace following dashed lines. All that work, combined with her fierce determination to be like her sisters, came together and for the first time she did school work 100% independent.
She was so proud of herself that last night at a church gathering she had to tell *everybody* what she did: “I did it all by myself”
Yes you did sweetheart and Mama and Daddy are so proud of you!!!
Wednesday, February 25, 2009
I am going to start at the beginning of the beginning. On January 2nd 1997, BooBear, John and I had gone to Leighton Barracks for shopping and lunch. John was active duty army and stationed in Germany. We lived in Giebelstadt, part of the 417th Base Support Battalion that included Leighton Barracks in Wuerzburg, Giebelstadt and the base in Kitizigen .
We were at Burger King. BooBear had milk with her kids meal. She didn’t finish it so I picked it up to finish it. I got it up to my mouth and I had to put it down. I could NOT drink it. I was sick to my stomach just thinking about drinking the milk.
John asked “are you pregnant”. I replied that I couldn’t be or that it was too soon to know. Well, just in case we stopped again at the PX (Post Exchange) and picked up a pregnancy test.
I don’t remember if I took it that afternoon or if I waited until morning. I do remember that John was home. I took the test and watched as it did NOT develop two pink lines. I was disappointed. I assumed the test was negative, after all, when I took the test with BooBear the two pink lines showed up IMMEDIATELY as I watched! I put the test down on the edge of the sink and went to tell John that the the test was negative. He too was disappointed as we had been trying for nearly a year to conceive. I had to run back upstairs for something and grabbed the test to throw away. I looked at again and I couldn’t believe it. There was a very faint second pink line. I wasn’t even sure that it was really there. I called John and he looked at it. Yes, there was two lines. But I couldn’t be pregnant could I? I think I ended up taking a total of 9 tests over the next couple of weeks. I finally was able to get to the base clinic and have it confirmed. Yes, I was indeed pregnant. Due Date: September 12, 1997.
Strangely around 8 weeks I noticed that I could NOT fit into my clothes. John jokingly asked me if I was having twins. The morning sickness was pretty strong but my dr kept reassuring me that it should taper off by 20 weeks. (I kept thinking.. really? It didn’t with BooBear. It got better but I had all day long, all pregnancy long sickness with her!). The doctor dismissed the idea of twins. I was showing so quickly because it was my second pregnancy. I wasn’t measuring large for date. I became more and more convinced that I was carrying twins. It was just a feeling that I had. And EVERYONE kept asking me “are you having twins?” I just answered, well my doctor says no, but I think it’s possible.
A few days before my routine “20 week” ultrasound (which I had at 21 weeks), I was reading in bed. John was trying to sleep. I woke him up. I just felt the baby move. Not a big deal. I had been feeling movement for several weeks now but this was different. I felt movement on BOTH sides AT THE SAME TME. I told John that we had two babies or an Olympic swimmer!
To be continued…..
Friday, February 20, 2009
Wednesday, February 18, 2009
Today's menu: scrambled eggs and toasted English muffins. She did NOT serve herself but did agree that the amount serve to her was "ok". (as in Mantha is this enough eggs? yes. Is this too much eggs? No.) During breakfast she made NO complaints and very proudly showed me her nearly empty plate. Now I don't care if she is a member of the clean plate club. Getting her to eat it all is NOT my goal. Teaching her to take responsibility for her actions and her choices, that's my goal. I was just tickled though that we had such a *pleasant* breakfast.
So who is this little girl? Mantha is 11 years, 6 months and 15 days old. She is a twin, the older one, and has an older sister and a younger sister. Her twin, the younger one, is "typically developing" and is a healthy 11 year old.
Mantha was born with Hypoplastic Left Heart Syndrome. It means that the left side of her heart did not develop properly. It's syndrome which means a collection of "defects". She was born with other congenital heart defects as well that are not usually associated with HLHS. She was also born with DiGeorge Syndrome. This is a genetic disorder affecting the 22 chromosome, 22q11.2 micro-deletion. Most of her "mini-diagnosis" stem from DiGeorge. But DiGeorge and HLHS is only 2/3 of the equation. Sometime in the womb, Mantha suffered a major stroke. It is believed that she had more than one. I believe she may have had one shortly after birth as well. At times it is hard to tell if the issues are due to the severe brain damage from the multiple strokes or if it is the "associated learning disorders" of DiGeorge.
We believe that Mantha is a miracle. If she'd had that stroke *after* birth, it most likely would have killed her. I am NOT a trained medical professional but even I could see that something was terribly wrong with her MRI. Because of her small size (she weighed 4lbs 5 1/2 oz at birth) and other medical issues we were not even sure she would survive her first open heart surgery. We were told she only had a 50% chance of living to age 5.
I'll share more details in installments that share the many procedures she's been through.
Tuesday, February 17, 2009
Parenting is a challenging and daunting task even under the best of circumstances. Parenting a child who has medical issues, developmental delays, and learning challenges goes beyond challenging and daunting. It goes beyond overwhelming, tiring and yes even frustrating. How do you take into consideration "special needs" without coming across as giving "special privileges".
How do you hold her to the same Godly standards as her sisters without violating the scripture that commands parents to not exasperate their children?
So what has this got to do with learning patience? I believe the Lord is teaching me patience as I learn how to parent Mantha. I don't feel patient. I feel frustrated when she screams and screams and at the same time I Know I can NOT back down. I can not let her think that screaming is acceptable. I can NOT say "oh well she doesn't understand" because she does! Maybe she doesn't have the same reasoning skills but she knows and *understands* that she is not getting her own way and that is why she is screaming. She wants her own way and she understands that she is NOT getting what she wants. It's a temper tantrum.
It has taken us YEARS of praying. Years of seeking the Lord and asking Him for wisdom and discernment. Wisdom for us to know when she understands and when she doesn't and discernment to know when she is manipulating us and when she is frustrated.
So this morning, she pours herself a second bowl of cereal (yea! We're gaining independence and the skills necessary to take care of herself.) and then decides she's "stuffed" and won't eat it. (uh, no go. You served yourself and the rule is if you take it, you eat it).
Patience, I think I'm starting to get it. Maybe. She screamed. She cried. I cried out to the Lord to help me. I realized that despite my emotions, I did have some measure of patience. It takes patience to see the BIG picture and not just the moment. It takes patience, to stop and pray and not to react with my gut emotion. (Which would have been to scream right back at her. *sigh* she does know how to push my buttons!) Sure it would have been easier to give in and not hold her to the same standards as her sisters but I don't believe that to be in her best interest. Today my patience has been tried. I didn't feel patient. But do you have to *feel* patient to *act* patient? I was able to calmly, restate the rules. I was able to take and spend the time working on this character issue. I think I'm beginning to see the Lord's hand as He molds me to be conformed to the image of Jesus.
When all was said and done, I held her close on my lap. We snuggled and then she went and ate her required 6 bites. I left the table, satisfied that she had obeyed. A few minutes later, a very happy little girl brought her EMPTY bowl to me and said "Look mama, I ate it all". Thank you Lord for granting me the patience to persist in seeing it through to the end.
Saturday, February 14, 2009
Mantha overheard me ask her older sister to get out the "Mother's Day pot". That's the pot that daddy gave mama for Mother's Day last year. Mantha misunderstood and thought that today must be Mother's Day and she was all set to celebrate Mother's Day.
She was gently corrected by her older sister who told her that today was Valentine's Day. Valentine's Day is the "day you tell people you love them". There was a pause and then Mantha responded with "[BooBear] I love you". A few minutes later, Mantha came to find me. She surprised me by walking into my bedroom and saying "Mommy, I love you". I found out a little later that Mantha was just doing what you're supposed to do on Valentine's Day. Tell the people you love that you love them.
Happy Valentine's Day and be sure to tell your loved ones that you love them!