I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.
I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant. Yet I have found online parents that have had helmets for their trisomy two year olds.
I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function. There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)
So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)
I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.
Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.) Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'
REALLY?!?! How would you feel if your child's doctor told you this?
Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."
I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...
What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart? I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.
Loving Life With Full Trisomy 18 - Edwards Syndrome - Helping Families with Prenatal and Postnatal Diagnosis of Trisomy 18, 13, and Related Chromosome Disorders - Dealing with Ethics, Genetics, and Related Medical and Health Issues
Thursday, August 4, 2011
Friday, June 10, 2011
A Nineteen Month Reprieve Ends... (PART II)
Friday 6/3 - It is the day after surgery and Rebekah continues her pattern of sleeping. Even though I haven't seen her awake for more than a few minutes in 5 days, I still am not too worried. Her blood pressure had come down and she looks more comfortable and peaceful than she has in a long time. But today is another challenge for us...
While in the OR, many attempts were made to get a central line into Rebekah. This is necessary for two reasons. 1) She has been without nourishment for over 5 days; and 2) The infectious disease doctor wants a central line for her UTI antibiotics. Both of these things cannot be done in a regular IV because Rebekah's veins are small and prone to 'blowing'. Dumping these things into her tissues can cause another set of problems. So we had an appointment with the PICC team to put in a PICC line. The 'Peripherally Inserted Central Catheter' would go up her arm, across her chest, and down into the vena cava artery that goes into the heart. This procedure is done under anesthesia using special ultrasound equipment, and this would be the second day in a row of anesthetizing Rebekah. The PICC team was also nervous because a central line from the groin area is typically easier to get into place than a PICC line from the arm.
Well, the doctor performing the procedure is Dr. DeVane. He and his team got the PICC line in first try! I was ecstatic and told him, "You are DeMan for DeVeins!" That made him smile. :-) Everyone was thrilled for this victory, and Rebekah did awesome under sedation. They said that trached kids typically need bagged during the procedure, but all she needed was a little blow by oxygen while under and she came out of it like a champ!
Saturday 6/4 - First day post-op that Rebekah has finally started 'waking up' and showing us those beautiful eyes and a few fleeting smiles! She started CPT (chest percussion therapy) three times a day, which is pretty standard post-op to help keep the lungs clear. She's in love with Respiratory Therapist, Josh, and he was the recipient of her first genuine sustained smile in over a week! We also finally started her TPN (Total Parenteral Nutrition) feeds. Regular IV provides the fluids and electrolytes you need to stay hydrated, but it does not provide your body with nutrition, which is the purpose of TPN. TPN puts directly into your blood stream dextrose, amino acids, sodium, potassium, magnesium, calcium, phosphorus, and lipids (fats). Of course, dumping this all directly into your blood stream also has its own set of risks as it taxes your liver and can cause blood clots. So it contains heparin to help with clotting and daily labs are drawn to tweak the TPN 'recipe' and watch for signs of liver toxicity and nutrient imbalances. The goal is to get her off the TPN as soon as possible, but the gut has to start working first. They expect it to be 4-7 days post-op for her system to be working again (inflamation clear and motility to be restored).
Saturday was also a great day for visitors! Rebekah got to see her brothers, her home nurse, and a special friend that is a doctor, but not one of her GHS doctors. :-) This is the first day in a week we've gotten her to interact.
Sunday 6/5 - Sunday started with a more fussy baby. Her stomach output doubled from yesterday and I think she is finally starting to feel the pain. Our only options for pain have been tylenol and morphine. Obviously, we don't want to use a lot of morphine since it slows motility and only works for a few hours. We were not allowed to use any motrin products because of her UTI (and possible kidney infection). But thankfully, her urine has been clean for several days, so they finally gave us the OK to use toradol (an effective motrin product that comes in IV form). We can only use this for a short period due to liver toxicity, but it did the trick and seemed to get her over the pain hurdle!
Today we've had our usual bloodwork, and abdominal and chest x-rays. Chest is clear and ab x-rays still show barium just sitting in her system going nowhere. No poop or evidence of bowels 'waking up'. We are pretty much in 'wait' mode...
Monday 6/6 - More waiting... waiting for her bowel to wake up, waiting for her to poop, waiting for her incision to heal... Daily blood work leads to a little tweaking of TPN feeds. We did have a first very small bowel movement, but no real good bowel sounds, so that is the extent of today's excitement. I put a call out to my friends to sit with Rebekah on Wednesday this week so I can spend a day with my parents. They have to leave on Saturday. I was overwhelmed by the response of volunteers! Right now, we are in a good spot, and the calm before the storm...
CAMP GHS -
Here is my story to tell for this part of our 'Camp GHS' (Greenville Hospital System) stay -
The one thing that makes me very sad about being in the hospital is the fact that we are missing our one true summer family vacation that we had scheduled a year ago. It is to a place called Camp New Hope near Boone, NC. It is for children with life-threatening disorders and their families. We went last year and had so much fun! It is a great time of respite because they fully stock your kitchen for you and pretty much take care of everything. We have use of a Kubota to explore the 160+ acres of mountain trails, there are canoes, tubes and fishing poles for water fun, and all kinds of activities to keep us occupied. We really needed this respite time as a family.
One of the days Rebekah was still out of it, we had a nurse that was pretty hands off. She pretty much told me the the diapers and general needs were my job. I chatted with her a little bit and was explaining how we had to cancel our vacation to Camp New Hope. She asked me what Rebekah would even do there (that she couldn't do at home, I assumed). And she later asked my husband if she 'does anything'. I feel really sorry that she is a pediatric nurse and she doesn't have the compassion or understanding to take care of special kids without insulting their families. I guarantee that Rebekah can do plenty, and she steals the heart of all who meet her! But even if she DIDN'T, that is not really relevant to the care she should receive.
That coupled with my sadness at missing Camp New Hope had me really bummed. But I really started thinking about the timing of events and realized that God is watching out for us always! Had this all occurred when we were in the middle of the NC mountains, I probably would've tried to treat her longer at 'home' before taking her to an ER. And I am pretty sure there is not a children's hospital anywhere near the camp. So we probably would've ended up at a general hospital with no peds focus. If we managed to get to a children's hospital, it probably would have been out of state and with doctors who don't know anything about Rebekah other than "she has trisomy 18". It really could've been a bad situation, and just the logistics of how we would manage the kids boggles me. But instead, we had a week where grandparents were able to come help us, she stayed local with doctors who already know how amazing she is, and our life wasn't thrown upside down by being out-of-state. Praise God for this stay at Camp GHS! It may not be where I want to be, but I know He has His hands on the situation.
While in the OR, many attempts were made to get a central line into Rebekah. This is necessary for two reasons. 1) She has been without nourishment for over 5 days; and 2) The infectious disease doctor wants a central line for her UTI antibiotics. Both of these things cannot be done in a regular IV because Rebekah's veins are small and prone to 'blowing'. Dumping these things into her tissues can cause another set of problems. So we had an appointment with the PICC team to put in a PICC line. The 'Peripherally Inserted Central Catheter' would go up her arm, across her chest, and down into the vena cava artery that goes into the heart. This procedure is done under anesthesia using special ultrasound equipment, and this would be the second day in a row of anesthetizing Rebekah. The PICC team was also nervous because a central line from the groin area is typically easier to get into place than a PICC line from the arm.
Well, the doctor performing the procedure is Dr. DeVane. He and his team got the PICC line in first try! I was ecstatic and told him, "You are DeMan for DeVeins!" That made him smile. :-) Everyone was thrilled for this victory, and Rebekah did awesome under sedation. They said that trached kids typically need bagged during the procedure, but all she needed was a little blow by oxygen while under and she came out of it like a champ!
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| Rebekah - right after the PICC line procedure, still asleep from the anesthesia. |
Saturday 6/4 - First day post-op that Rebekah has finally started 'waking up' and showing us those beautiful eyes and a few fleeting smiles! She started CPT (chest percussion therapy) three times a day, which is pretty standard post-op to help keep the lungs clear. She's in love with Respiratory Therapist, Josh, and he was the recipient of her first genuine sustained smile in over a week! We also finally started her TPN (Total Parenteral Nutrition) feeds. Regular IV provides the fluids and electrolytes you need to stay hydrated, but it does not provide your body with nutrition, which is the purpose of TPN. TPN puts directly into your blood stream dextrose, amino acids, sodium, potassium, magnesium, calcium, phosphorus, and lipids (fats). Of course, dumping this all directly into your blood stream also has its own set of risks as it taxes your liver and can cause blood clots. So it contains heparin to help with clotting and daily labs are drawn to tweak the TPN 'recipe' and watch for signs of liver toxicity and nutrient imbalances. The goal is to get her off the TPN as soon as possible, but the gut has to start working first. They expect it to be 4-7 days post-op for her system to be working again (inflamation clear and motility to be restored).
Saturday was also a great day for visitors! Rebekah got to see her brothers, her home nurse, and a special friend that is a doctor, but not one of her GHS doctors. :-) This is the first day in a week we've gotten her to interact.
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| Rebekah with her Nurse Becky |
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| Rebekah with her special friend, Dr. Putnam |
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| Mommy finally getting to hold Rebekah. I had been afraid to hold her since surgery because I didn't want to hurt her tummy. |
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| Rebekah's brother, Isaiah, giving her a big kiss. Her brothers miss her a lot! |
Today we've had our usual bloodwork, and abdominal and chest x-rays. Chest is clear and ab x-rays still show barium just sitting in her system going nowhere. No poop or evidence of bowels 'waking up'. We are pretty much in 'wait' mode...
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| Rebekah's tummy must be feeling better because she was pulling her legs up and kicking away! |
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| Dear Lord, Thank you for making me feel better. Now please help me to poop today! Amen |
Here is my story to tell for this part of our 'Camp GHS' (Greenville Hospital System) stay -
The one thing that makes me very sad about being in the hospital is the fact that we are missing our one true summer family vacation that we had scheduled a year ago. It is to a place called Camp New Hope near Boone, NC. It is for children with life-threatening disorders and their families. We went last year and had so much fun! It is a great time of respite because they fully stock your kitchen for you and pretty much take care of everything. We have use of a Kubota to explore the 160+ acres of mountain trails, there are canoes, tubes and fishing poles for water fun, and all kinds of activities to keep us occupied. We really needed this respite time as a family.
One of the days Rebekah was still out of it, we had a nurse that was pretty hands off. She pretty much told me the the diapers and general needs were my job. I chatted with her a little bit and was explaining how we had to cancel our vacation to Camp New Hope. She asked me what Rebekah would even do there (that she couldn't do at home, I assumed). And she later asked my husband if she 'does anything'. I feel really sorry that she is a pediatric nurse and she doesn't have the compassion or understanding to take care of special kids without insulting their families. I guarantee that Rebekah can do plenty, and she steals the heart of all who meet her! But even if she DIDN'T, that is not really relevant to the care she should receive.
That coupled with my sadness at missing Camp New Hope had me really bummed. But I really started thinking about the timing of events and realized that God is watching out for us always! Had this all occurred when we were in the middle of the NC mountains, I probably would've tried to treat her longer at 'home' before taking her to an ER. And I am pretty sure there is not a children's hospital anywhere near the camp. So we probably would've ended up at a general hospital with no peds focus. If we managed to get to a children's hospital, it probably would have been out of state and with doctors who don't know anything about Rebekah other than "she has trisomy 18". It really could've been a bad situation, and just the logistics of how we would manage the kids boggles me. But instead, we had a week where grandparents were able to come help us, she stayed local with doctors who already know how amazing she is, and our life wasn't thrown upside down by being out-of-state. Praise God for this stay at Camp GHS! It may not be where I want to be, but I know He has His hands on the situation.
Thursday, June 9, 2011
Blessings and the Brave Little Soul
On this 'trisomy journey', I have learned so many things, and have been subjected to many viewpoints that differ from mine. The most common argument used for why children like Rebekah should not be given a chance is that they will endure a lifetime of pain and suffering. Thus they are terminated or denied medical care after birth because prolonging their life would be irresponsible and cruel.
I think using 'pain and suffering' as an excuse to terminate pregnancies or deny medical care is just plain crazy. While I do not deny that my daughter feels pain when she has to go through medical procedures, simply seeing her smile (even in the midst of an uncomfortable situation) speaks volumes about her own will and drive to live. If I were to personally get cancer, or have a debilitating illness, I can guarantee that I would endure the 'pain and suffering' of treatment in order to be here for my family. For most people, if their loved one requires intervention to live, we do what we can to provide it. If a 'chromosomally-normal' child were born, but had severe obstructive apnea or a life-threatening heart defect, it would be considered abuse not to seek treatment to correct the problem. Yet we sell the idea that treating trisomy 18/13 kids the same way is irresponsible.
People also use pain and suffering as an excuse to deny that there is a God, or that God is good. I believe that God uses times of trials and suffering to make us lean on him. He gives us strength through our weakness, and it can mold us into better people - compassionate and loving and equipped to show Jesus to the world. There are so many verses in the Bible that speak about pain and suffering. Here are just a few that speak to me:
Susan
I think using 'pain and suffering' as an excuse to terminate pregnancies or deny medical care is just plain crazy. While I do not deny that my daughter feels pain when she has to go through medical procedures, simply seeing her smile (even in the midst of an uncomfortable situation) speaks volumes about her own will and drive to live. If I were to personally get cancer, or have a debilitating illness, I can guarantee that I would endure the 'pain and suffering' of treatment in order to be here for my family. For most people, if their loved one requires intervention to live, we do what we can to provide it. If a 'chromosomally-normal' child were born, but had severe obstructive apnea or a life-threatening heart defect, it would be considered abuse not to seek treatment to correct the problem. Yet we sell the idea that treating trisomy 18/13 kids the same way is irresponsible.
People also use pain and suffering as an excuse to deny that there is a God, or that God is good. I believe that God uses times of trials and suffering to make us lean on him. He gives us strength through our weakness, and it can mold us into better people - compassionate and loving and equipped to show Jesus to the world. There are so many verses in the Bible that speak about pain and suffering. Here are just a few that speak to me:
- “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 2:9)
- “This suffering is all part of the work God has given you. Christ, who suffered for you, is your example. Follow in his steps.” (1 Peter 2:21)
- “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” (John 9:3)
- “Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us.” (2 Corinthians 4:16-17 / The Message)
Susan
Laura Story - "Blessings" Lyrics
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things
Cause what if Your blessings come through raindropsWhat if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdomYour voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
Cause what if Your blessings come through raindropsWhat if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise
When friends betray usWhen darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise
Thursday, June 2, 2011
A Nineteen Month Reprieve Ends... (PART I)
After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve. On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.
We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital. They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal. But it didn't go that way...
Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31. It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended. Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down.
After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.
So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!
Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population. This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL. And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.
Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.
I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah. Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand.
We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital. They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal. But it didn't go that way...
Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31. It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended. Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down.
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| Michael kissing Rebekah during the Upper GI Study |
An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.
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| Rebekah's distended tummy on Wed 6/1 |
For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.
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| Rebekah's tummy on 6/2. The g-tube button was being pushed by so much pressure that it was sticking out was past the stomach. |
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.
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| Dropping Rebekah off at the OR. Michael had to be at home for Isaiah's Kindergarten graduation. It's tough having to 'choose' between your children. :-( |
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| Rebekah's tummy when we picked her up post-op. Looks so much better! It will continue to shrink as she recovers from major abdominal surgery. |
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| Sweet Rebekah looking much better after surgery. Her face is relaxed and her lips actually have color. |
I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah. Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand.
While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...
Sunday, May 15, 2011
Rebekah and Caleb
In March Rebekah and I had the great privilege to visit her trisomy 18 friend, Caleb, for his 2nd birthday.
Here are a few more photos from our 'wedding' between Caleb and Rebekah taken by Ocala Star Banner journalist, Jacqui Janetzko. Thank you, Jacqui, for these beautiful memories!!
My friend, Jeannette (Caleb's Mom), is really blessed because their local newspaper is following Caleb's life story. They have followed his birthdays and major events, and will be posting monthly articles on life with a special needs child. In addition, the Adamyk's have been asked on several occassions to give a presentation at the local university to med students on trisomy 18. What an awesome way to educated these students so that they will hopefully manage their future trisomy patients on a case-by-case basis, and not under the assumption that all children with trisomy 18/13 are incompatible with life!
I am so proud of Jeannette and so happy for the positive impact Caleb is able to make on others! And I am so glad that her local media is sharing Caleb's story! I wish our local newspaper or news stations would find a message of hope like this as something newsworthy...
Stroll for Hope - TEAM BUDD ZOO
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| TEAM BUDD ZOOBack: Michael & Susan Front (left to right): Isaiah (6), Jeremiah (8), Elijah (10) holding Rebekah (2), Josiah (4) |
Please support TEAM Budd Zoo in a Stroll for Hope to raise money for SOFT. Your tax-deductible donation of even a few dollars will go to help educate both families and the medical community about trisomy 18, 13 and related disorders! Read below for more information...
When I was pregnant with Rebekah, the majority of the information I got from doctors and online resources were full of doom and gloom. We prepared for the worst. But when Rebekah ended up living and thriving, I was left without information on how to care for her. One of the few organizations I've found that actually has medical advisors and trisomy experts, as well as an international registry of trisomy 18/13 families, is Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) - a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.
We are excited - all seven members of the Budd Zoo will be attending the SOFT Conference in Chicago in July! The conference will provide a free medical clinic for the SOFT kids, and Rebekah will be able to consult with 3 specialists to get additional advice on her care.
As part of the conference activities, we will be participating in a Stroll for Hope event to raise money for SOFT. We are taking pledges/donations for our stroll around HOPE Hospital in Chicago, IL. Your donations are tax deductible and go to a great organization! And thanks to SOFT, our family has received a scholarship to help us offset the conference costs, and we want to be able to give back so other families can attend in the future.
I encourage anyone facing a journey with a SOFT child, including the medical professionals that will care for them, to join this organization because of all the things they can provide:
- Help and support for families;
- Medical advisors who are experts on trisomy 18/13 kids;
- Materials available for care of trisomy kids;
- SOFT Times, a quarterly magazine full of informative articles, life experiences, practical information, summaries of latest research articles, tons of inspiring pictures of living and thriving children, and much more;
- New family packet that is a great resource.
Most important - this is a volunteer run organization! Even the medical advisors are volunteer. All money donated to SOFT goes to subsidize conference costs, create informative materials for families, education opportunities, support of trisomy-related studies, and so many other good programs! It DOES NOT pay for salaries or projects in conflict with the purpose of the organization.
Thank you for your love and support of Rebekah, and children like her!
Saturday, May 7, 2011
Little God Moments...
In the hustle and bustle of life with 5 kids, a calendar full of activities from early morning until late night, and sleep deprivation, I sometimes find myself getting frustrated with life...feeling a little out-of-control and discouraged.
In an attempt to get that under control, I am trying to do a better job of clearing my calendar of nonessential activities, focusing on daily quiet time (with the help of my new NLT One Year Chronological Bible), and appreciating my very blessed life more. But I struggle daily with being focused on myself and not focused enough on what God is doing or wanting from me 'today'.
Today's reading included a passage from Psalms 9:1-2.
So it shouldn't come as a surprise that I had a moment that made me want to tell everyone how good my God is! It was a moment that really encouraged me and made me look at the last few weeks to see how God is always working in my life, even when I am not giving him my best. I wanted to capture today's moment and one other recent moment so I can remind myself and others that we experience these little God moments all the time - we just need to take the time to recognize and rejoice in them!
So here's my God Moment...
Michael is out of town and I needed to get all 5 kids to a piano recital practice at 6:45p. If I cooked, it just wasn't going to happen. So thanks to having some free kids meal coupons for Chick-fil-a (and thanks to Bell's Crossing Elementary and our Woodruff Rd Chick-fil-a), we had dinner on-the-cheap. That alone is a blessing! :-)
A couple sitting near us in Chick-fil-a were driving through town and decided at the last minute to stop at this particular Chick-fil-a so that the boy with them (I didn't catch if he was their son, grandson, nephew...) could play and hopefully find someone else to play with for a few minutes before they continued on. The child was thrilled to see my 4 boys there! They asked me about Rebekah and we started talking. They put two and two together and realized that Rebekah is the unborn baby they had been praying for over 2 years ago and continue to pray for, thanks to learning her story from their neice who attends my church. What a small world! And what a blessing for them to meet the little miracle baby they had faithfully been praying for! They were surprised how well she looked/acted for being considered 'incompatible with life'.
In addition to getting to meet Rebekah, they were also able to give me some important advice and a promise for future help so that I might be able to have a better chance of getting some media coverage for one of our future local trisomy family meetups. We were both encouraged and excited about this God-orchestrated moment!
God Moment #2...
So as I was putting these thoughts together, another obvious God moment jumped out that happened just last weekend.
Saturday mornings, at the moment, are filled with soccer games. Last Saturday, we headed to Yogurt Mountain to socialize/celebrate after Isaiah's soccer game.
The coach's wife, Lisa, was not planning to go to Yogurt Mountain this day because it was on the other side of town and she wanted to get some things done. She really did not want to go. But at the last minute, she just felt the urge that she needed to go.
When we got there, I pulled Rebekah out of her car seat with a feeding tube still attached to her, and managed to totally break off the button mechanism that allows the feeding tubes to attach and lock into her feeding button. It was going to be impossible to feed her without getting the tube changed out, and the type she has (AMT Mini-One Non-Balloon Button) needs to be changed at the Peds Surgery office or, in case of a weekend/after-hours, in the ER!
The dilemma I had was that Michael, Elijah, and Jeremiah were getting ready to head out of town for a hiking/primitive camping trip that they had been looking forward to for weeks. And if they stuck around for my unplanned ER trip, their weekend plans would be ruined. I had Josiah(4), Isaiah (6), and Rebekah. Just how fun could a long ER trip be with a 2, 4 and 6 year old? Also, I did not have her backup g-tube, it was 20 minutes at home and the opposite direction of the hospital. The hospital is 30 minutes from our house. So I am looking at about 1 1/2 hours of driving time too.
I decided to sit there and at least enjoy some frozen yogurt until I figured out the least painful course of action. Well God bless Lisa, because she offered to take Josiah and Isaiah to their house (knowing that I had a long drive and wait ahead of me, and it would be hours before I could pick them up). What a total blessing to me, AND to my boys!! And the greater blessing is that Lisa recognized that she was meant to be there, at that time, for that purpose. And she was so gracious and insistent in her offer that I totally felt it was from her heart and that I was in no way putting her out or taking advantage of her. It was so great to be able to send them off with that family knowing that my kids would not be bored to death in the ER, that someone actually wanted to watch them, and that I did not ruin the weekend for Michael and my two oldest boys! And as I texted Lisa several times with updates from the ER, she continued to assure me that everyone was fine and she was happy to help out.
I was at the ER for quite some time, but I managed to pick up my boys just right before Lisa and her family had a scheduled activity. What God-timing for the whole day!
There are so many other little moments in my life that clearly show God's hand. I need to take the time to recognize them, appreciate them, and thank/praise God for such moments!
God is good, all the time! And all the time, God is good!
In an attempt to get that under control, I am trying to do a better job of clearing my calendar of nonessential activities, focusing on daily quiet time (with the help of my new NLT One Year Chronological Bible), and appreciating my very blessed life more. But I struggle daily with being focused on myself and not focused enough on what God is doing or wanting from me 'today'.
Today's reading included a passage from Psalms 9:1-2.
I will praise you, LORD, with all my heart;
I will tell of all the marvelous things you have done.
I will be filled with joy because of you.
I will sing praises to your name, O Most High.
So it shouldn't come as a surprise that I had a moment that made me want to tell everyone how good my God is! It was a moment that really encouraged me and made me look at the last few weeks to see how God is always working in my life, even when I am not giving him my best. I wanted to capture today's moment and one other recent moment so I can remind myself and others that we experience these little God moments all the time - we just need to take the time to recognize and rejoice in them!
So here's my God Moment...
Michael is out of town and I needed to get all 5 kids to a piano recital practice at 6:45p. If I cooked, it just wasn't going to happen. So thanks to having some free kids meal coupons for Chick-fil-a (and thanks to Bell's Crossing Elementary and our Woodruff Rd Chick-fil-a), we had dinner on-the-cheap. That alone is a blessing! :-)
A couple sitting near us in Chick-fil-a were driving through town and decided at the last minute to stop at this particular Chick-fil-a so that the boy with them (I didn't catch if he was their son, grandson, nephew...) could play and hopefully find someone else to play with for a few minutes before they continued on. The child was thrilled to see my 4 boys there! They asked me about Rebekah and we started talking. They put two and two together and realized that Rebekah is the unborn baby they had been praying for over 2 years ago and continue to pray for, thanks to learning her story from their neice who attends my church. What a small world! And what a blessing for them to meet the little miracle baby they had faithfully been praying for! They were surprised how well she looked/acted for being considered 'incompatible with life'.
In addition to getting to meet Rebekah, they were also able to give me some important advice and a promise for future help so that I might be able to have a better chance of getting some media coverage for one of our future local trisomy family meetups. We were both encouraged and excited about this God-orchestrated moment!
God Moment #2...
So as I was putting these thoughts together, another obvious God moment jumped out that happened just last weekend.
Saturday mornings, at the moment, are filled with soccer games. Last Saturday, we headed to Yogurt Mountain to socialize/celebrate after Isaiah's soccer game.
The coach's wife, Lisa, was not planning to go to Yogurt Mountain this day because it was on the other side of town and she wanted to get some things done. She really did not want to go. But at the last minute, she just felt the urge that she needed to go.
When we got there, I pulled Rebekah out of her car seat with a feeding tube still attached to her, and managed to totally break off the button mechanism that allows the feeding tubes to attach and lock into her feeding button. It was going to be impossible to feed her without getting the tube changed out, and the type she has (AMT Mini-One Non-Balloon Button) needs to be changed at the Peds Surgery office or, in case of a weekend/after-hours, in the ER!
The dilemma I had was that Michael, Elijah, and Jeremiah were getting ready to head out of town for a hiking/primitive camping trip that they had been looking forward to for weeks. And if they stuck around for my unplanned ER trip, their weekend plans would be ruined. I had Josiah(4), Isaiah (6), and Rebekah. Just how fun could a long ER trip be with a 2, 4 and 6 year old? Also, I did not have her backup g-tube, it was 20 minutes at home and the opposite direction of the hospital. The hospital is 30 minutes from our house. So I am looking at about 1 1/2 hours of driving time too.
I decided to sit there and at least enjoy some frozen yogurt until I figured out the least painful course of action. Well God bless Lisa, because she offered to take Josiah and Isaiah to their house (knowing that I had a long drive and wait ahead of me, and it would be hours before I could pick them up). What a total blessing to me, AND to my boys!! And the greater blessing is that Lisa recognized that she was meant to be there, at that time, for that purpose. And she was so gracious and insistent in her offer that I totally felt it was from her heart and that I was in no way putting her out or taking advantage of her. It was so great to be able to send them off with that family knowing that my kids would not be bored to death in the ER, that someone actually wanted to watch them, and that I did not ruin the weekend for Michael and my two oldest boys! And as I texted Lisa several times with updates from the ER, she continued to assure me that everyone was fine and she was happy to help out.
I was at the ER for quite some time, but I managed to pick up my boys just right before Lisa and her family had a scheduled activity. What God-timing for the whole day!
There are so many other little moments in my life that clearly show God's hand. I need to take the time to recognize them, appreciate them, and thank/praise God for such moments!
God is good, all the time! And all the time, God is good!
Tuesday, April 26, 2011
Recall Notice
RECALL NOTICE
The Maker of all human beings (GOD) is recalling all units manufactured, regardless of make or year, due to a serious defect in the primary and central component of the heart.
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.
Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion
The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENT from the Repair Technician, Jesus, into the heart component.
No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control
Please see the operating manual, the B.I.B.L.E. (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.
WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus.
DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!
- GOD
P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'!
Because He Lives!
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.
Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion
The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENT from the Repair Technician, Jesus, into the heart component.
No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control
Please see the operating manual, the B.I.B.L.E. (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.
WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus.
DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!
- GOD
P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'!
Because He Lives!
Monday, April 18, 2011
SC Trisomy 18 Meetup and Birthday Party
Rebekah at 22 months
We will be celebrating Rebekah's 2nd birthday this week! Unlike her grand 1st birthday affair, the guest list is much smaller and the venue is our backyard! However, the guest list is amazing - trisomy 18 families from possibly 4 states coming to celebrate and meet together for support! Kids will range in age from 1-10 years old! We will also have a child with a 2q microdeletion, a chromosome 15 partial deletion, and possibly a trisomy 9p there as well.
Part of my passion since having Rebekah is to raise awareness of Trisomy 18 and similar conditions, and to EDUCATE the medical community that these children can thrive and that they deserve a chance. Each one should be evaluated as an individual, and not as a label - "incompatible with life". So I sent out the following note to four local TV stations and one local newspaper hoping that someone would consider coming out and helping us to raise awareness.
Hope it works! Let me know what you think or how I could've made it better (for future events).
On Saturday, April 23rd, there will be a gathering of children with Trisomy 18 – a condition considered ‘incompatible with life’. These children will range in age from 1-10 years old – pretty good for someone told they shouldn’t be living! We invite you to share their story. The details are below.
Imagine if you were told that your unborn child was incompatible with life? How would you feel if your newborn were denied medical services and life-saving equipment such as apnea and pulse ox monitors because it would prolong the inevitable? What if you were told that if your child does survive birth, you should not do any medical interventions because you would regret your decisions down the road? What would go through your mind if you were told that your child would be a vegetable and never recognize you or interact with their environment? That is precisely what most trisomy 18/Edward’s Syndrome parents are told when diagnosed.
Trisomy 18 is where there is an extra 18th chromosome. It is the second most common trisomy behind trisomy 21 (Down’s Syndrome), and about one in 6000 live births are to a trisomy 18 child. But still not many people know about it because of the low survival rate and lack of medical community support to help these children. 90% of the babies do not survive birth (either because of medical issues or termination) and of those that survive, only 10% will see their first birthday, usually with severe medical issues and global developmental delays. In the medical books, Trisomy 18 really does carry with it the term of being ‘incompatible with life’; that is what doctors are taught in med school, and what parents are told upon finding out their child has this genetic disorder.
On 4/21/09, our daughter, Rebekah Faith, was born with Trisomy 18. She would have died from severe obstructive apnea if we had not made a decision at 6 weeks old to give her a life-saving tracheotomy. The first year was full of ups and downs, but she has been doing really well despite severe developmental delays and she is redefining the term, ‘incompatible with life’. We have learned so much from our journey with Rebekah over the past two years, and she is our little miracle and our hero! We appreciate life so much more because of having her with us, and we definitely see God’s hand in the orchestration of her life.
In April 2010, the Simpsonville Tribune Times ran an article of her story and first birthday party, which was a grand event with several hundred people joining us at First Baptist Church of Simpsonville to celebrate her awesome journey and milestone. On the afternoon of Saturday, April 23rd, we will be celebrating her SECOND miraculous birthday with a much smaller party, but we are expecting at least 5 other trisomy 18 children, and a few other children with chromosome deletion syndromes, to join us at this celebration! This is quite incredible to have these kids together in one place, and see how much joy and love they bring to their families! None of them deserve the label of being called ‘incompatible with life.’ These children do not deserve to be thrown away and ignored because they have this label. If you could see all of them together, you would see just how full of life they are!
We invite you to help change the views and medical practices of these children. Please come to Rebekah’s party on Saturday, April 23rd between 2-3 pm to meet and share the stories of these amazing trisomy 18 children, and let families and doctors know there is hope and support for children of trisomy 18.
Wednesday, March 30, 2011
Special Friends and Special Celebrations
Early March, I made a very special trip down south to Ocala, FL with Rebekah. We were on a mission to celebrate a very special 2nd birthday party for another trisomy 18 child named Caleb. I have been friends with his mom, Jeannette, for about two years. We met on facebook and I started a group called Trisomy 18 Mommies.
Jeannette is my BFF - we've shared the 'Trisomy Journey' tears, fears, and joys together... but it has always been 'virtually'. We would even talk on the phone several times per week, but we had never met in person.
I was so excited to finally meet her!
Before the trip, Jeannette and I joked about dressing up Rebekah and Caleb in wedding garb and taking some photos. Very soon I will have a video slide show of this event! Although it started out as a fun idea, in the back of our head there was always the reality that they will most likely never get to experience a real wedding.
The birthday party was amazing and I got to meet, not only Jeannette and Caleb, but several other special friends!!
What's really amazing is that Caleb's local news has been following his story from the beginning. Here is a link to the most recent story about his birthday party and all of us who traveled to be there for the special occasion! Caleb Turns Two Amid Support For Edwards Syndrome Kids
They have published several newspaper articles about Caleb and the journalist following Caleb's story recently posted a mini-documentary about him (below)!
If you'd like to keep up with Caleb's story, here is Jeannette's blog.
 |
| Jeannette and Susan |
Jeannette is my BFF - we've shared the 'Trisomy Journey' tears, fears, and joys together... but it has always been 'virtually'. We would even talk on the phone several times per week, but we had never met in person.
I was so excited to finally meet her!
 |
| Rebekah and Caleb in their 'wedding' clothes. |
 |
| Rebekah and Caleb holding hands. :-) |
The birthday party was amazing and I got to meet, not only Jeannette and Caleb, but several other special friends!!
What's really amazing is that Caleb's local news has been following his story from the beginning. Here is a link to the most recent story about his birthday party and all of us who traveled to be there for the special occasion! Caleb Turns Two Amid Support For Edwards Syndrome Kids
They have published several newspaper articles about Caleb and the journalist following Caleb's story recently posted a mini-documentary about him (below)!
If you'd like to keep up with Caleb's story, here is Jeannette's blog.
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