My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.

Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.

When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.

The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.

It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!

May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!

When Did This Happen

I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.

The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.

The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".

Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.

These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.

And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.

My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

Teenage Girls

I wouldn't wish one on my worst enemy. Seriously.

I can deal with Cyclical Vomiting Syndrome, Down syndrome, Hirschsprung's Disease, Sensory Processing Disorder, ADHD (that's what Bert's autistic symptoms turned out to be), ANYTHING, but the teenage girl.....Lord help me!

Here we are

I am still getting it down. I missed yesterday, but had an extra post last week, so I'm still on #14 for October.

Schmoozer is up in the hospital again. We have a fabulous nursing student who is pulling him around in a wagon right now, so here I am. He keeps having these bilious vomitting episodes, which with his history of Hirschsprung's disease, lands him in the hospital. This time they have done a metabolic profile, and his lactic acid levels are just over the normal range, as well as some other acid levels, so they are doing amino acid levels that have to be sent out to Mayo Clinic for reading. He also has an elevated Potassium level that they are rechecking to determine if it was a fluke or is actually a high level (evidently if the blood sits for a bit you can get a false high reading).

I don't know much about what they are telling me right now, and I'm concerned and frustrated. I'm off to google this stuff to maybe get an idea of what's going on. BLEH.

My BIL and "Poopsie"

***EDITED***

OK, this is corney, but it made me laugh. We took Schmoozer to the GI doctor yesterday. She gave him a little bear as we left. The receptionist commented that the beanie baby looked like Pooh, so I checked it's name. Poopsie. The GI doctor gave Schmoozer Poopsie. HA!

Bert goes to the neurodevelopmentalist today. I want to discus if his Sensory Dysfunction puts him on the autistic spectrum or not. My hunch is that it might, but I'm far from being an expert, just a mom with fast Google fingers.

Rockstar is of to West Point to see WP graduate from boot camp. She isn't sure how she feels about him right now and hasn't been wearing her promise ring lately. I'm hoping she sees him and falls head over heels all over again. We'll see.

Beaner and I went shopping on Monday. A long overdue girls day out. We had more fun than any two people should, and she got totally spoiled. I can't think of a child that deserves it more!

Finally we are staying put. No move, no house selling. We are staying in our home county. It's official. The state has made the Chief's permanant post our home county. This is answered prayer for sure.

Long Time No.....

blog.

Seems we've been quite busy in the Smugglerschmoo house. I'll fill you in in chronological order.

First, after my last post, little Schmoozer started getting irritable, then crabby then stopped eating, then started barfing, then barfed till he dry heaved and barfed bile. With his history of surgery on his tummy, we called the surgeons, and he was admitted to the hospital for enterocolitis, as a complication of his pre-existing Hirschsprung's Disease. After admission, both of the surgeons caring for Schmoozer stated that if this happens after the pull-through surgery, it can often happen subsequent times in the following year, to be on the lookout, and to anticipate possible additional hospital admissions.

Upon discussing this with the Chief we found this to be the straw that broke the proverbial camels back, and decided to request a hardship transfer from the tiny town to which we were supposed to be moving, to the metropolitan area where we currently live in order to be near the children's hospital and the 5 pediatric specialists with whom Schmoozer currently gets his care.

The following events happened rapid fire, and within 24 hours the Chief had an emergency assignment to the county in which we currently reside, and by the end of the week we had secured all of the documentation required for the state to grant the hardship transfer. Now we wait to find out which local county we will be living in. The air in our house has become lighter, and we know our decision is what we need for our family.

Now to add some background personally. I had been at the end of my rope. I did not know where to turn, and had been asking God to release our family into normal living again, and to allow me to reside in the same house with my husband. Although the circumstances are not what I would have chosen, God has provided in his own time and way, and I can see his hand in the events of the past weeks. Once again I am keenly aware of the workings of the Spirit and his abundant blessing in times of difficulty. Our God is certainly awesome!

This Morning

As is our daily habit, when Bert woke up this morning, I carried him back to my bed with me. This started back in the days when he was up before the crack of dawn and I would pray for him to go back to sleep. Now it continues because with his low tone and flexible joints he is the best cuddler around.

Anywho, Bert didn't fall back to sleep this morning which is fine cuz he slept till 6:45. So we are snuggling in bed and he starts rubbing his index finger over my face. He pauses for awhile, then does it again. My eyes were closed, and when I opened them to determine the cause of this peculiar behavior, I saw that he was picking his nose (into his 4th week of the cold from h***) and rubbing his boogers on my cheeks until they came off his fingers.

We are starting cloth diapers on Schmoozer. He has been pooping 6-12x daily since his surgery, and I just can't afford that many disposables. I have meant to do it for a long time, but needed this push to get me over the cusp. I got some great advice from an online friend, so hopefully it will be smooth sailing. What I didn't expect is the bulk. The kid looks like a tank with them on.

Cheesehead had Senior pics done yesterday. It was so fun and she looked awesome. I can't wait till we get the proof book.

I found out yesterday that the girls next door find it entertaining to run away from Bert. They will call him over and then run away, giggling. I can see how it happens, he doesn't cry, can't tattle tale, and falls for it every time. Yep, I can see how it happens, but it still hurts. I called their mom while very calm and after prayer. I just told her what was happening and that I know she would never allow that if she knew, and asked if she would discuss it with the girls. I think she was very receptive. The Chief blew a nut. He said those girls shouldn't be allowed in our yard anymore. I have to admit that my momma bear instincts agree, but we must help others understand and accept him, or ultimately he looses, and we all loose. We have a great opportunity to help others learn about disabilities, we just need to keep our own hurt and anger at bay in order to get optimal reception.

Beaner is the most delightful girl on the planet, I'm sure of it. Yesterday at our church's summer program, they decorated crosses with stones. She very carefully arranged her stones, and was very pleased with her results. When she went to retrieve it at the end of the day from the drying table, it was gone. Another Beaner had mistakenly taken it. There was the other Beaner's cross, left on the table. Not very carefully done. Beaner cried. Now for the record, she endo-ed on her bike and scraped/cut her chin, scraped her leg, and bruised her pubic bone, and hardly shed a tear, but she was just so disappointed by the loss of her cross. A lovely friend gave her a new cross and stones to redo, but it just isn't the same. Phooey.

A Few Quick Thoughts

Just for the record, Scmoozer is doing great. He poops about 12-15x daily which is crazy, but he is eating better and has his full energy level back. He got a cold from Bert, and Bert got an ear infection with the cold, so we are watching him closely. So far, so good. It is crazy that after several agonizing months of pursuing a diagnosis for his bowel trouble, once the diagnosis was made, the surgery and recovery seem like a non-event in comparison.

We are trying to find our summer groove. I'm hoping it hits in the next week or two. With Chief being gone from 5-10 days at a stretch, having 4 kids in the house all day every day looks daunting right now. We'll see how it goes. With Bert's ear and Schmoozer's butt, I was glad to have the chief home for the week. The weather was great and we had a very enjoyable time as a family.

I'm grumpy this morning, so I'll probably wrap up and go veg while my house turns into a cleanup project that would baffle FEMA.

Phil & Millie

Phil and Millie are my FIL and MIL. If you're a bit slow just say it out loud until you get it. Phil, Millie and I have some inherent differences. Though no parent is perfect, they really blew it, especially with Cheese. They spoiled, indulged, tolerated and worst, enabled her to the point of death, literally. But worse than that, they continue the legacy with Cheesehead. They treat her just the same as they did her mom, and I truly fear for the results. That aside, they are really nice people. They are misguided and broken, but very nice and easy to get along with. I am very grateful that the Spirit has given me grace to love and accept them. I couldn't do it on my own. So now there is a new story, but allow me a few moments to lay out the background.

It started last July, just over a month after we brought Schmoozer home. He had a fever and vomitting and a subsequent bowel impaction. The running theory at the time was that he got dehydrated from a virus, and with the tendency toward constipation, got impacted. I now believe it was a case of entercolits, secondary to the Hirschsprung's Disease we now know he has. Anywho, we were just told to prune juice the crap out of him, and spent our July Fourth week camping at Phil and Millie's with a very sick baby. (Millie's birthday is the 4th of July, so we always have a big shindig.)

As time progressed, we were unable to increase Schmoozer's bottle feeds over 4-5 ounces, 4-5 times daily. He was getting 16-24 ounces daily, which just isn't enough to sustain growth. In January, when admitted for RSV, we realized that he had only gained 6 ounces since November. The hospital staff marveled at the girth of this skinny baby's belly, and repeatedly asked about it. Our pediatrician seemed non-plussed, and told us it was low-motility secondary to Down syndrome and not to worry. Schmoozer lost about 20 ounces during his illness, and was put on Pediasure to ensure that he would regain the lost weight. At my insistence, our pediatrician ordered a Barium enema to check for Hirschsprung's disease. When it came back without the typical tell-tale sign, but showing Schmoozer's bowel dilated to about 4x the normal size, I asked the pediatrician what to do next. We increased Miralax, got him on Synthroid for hypothyroidism, and figured that would clean him out. It didn't, and I got pushy. I called the office daily for help, and finally insisted on a consult with a GI doc. The appointment was set for June 24, and on the chief's recommendation, I called for a cancellation list, getting an appointment with the Nurse Practitioner in April. The NP got all kinds of tests ordered, got us in with the surgeon for the rectal biopsy, and told us that she'd dig to the bottom of Schmoozer's problem and get our baby healthy and growing again.

Long story short, the rectal biopsy came back positive for Hirschsprung's disease, and we have surgery scheduled. This is where Phil & Millie come back in. Knowing that I'm typically a laid back and mild-mannered person, they knew that it took a lot of gumption for me to advocate for Schmoozer. Well, when it comes to my kids, that's the one area where my gumption is in long supply. In this particular situation, being covered by much prayer of family, friends and church family, there were some particular spiritual nigglings that got me farther than I ever could have on my own. So Phil and Millie are pretty impressed with me. Phil, in his grand way, insists that God put Schmoozer with us for such a time as this, and goes on to say that if he had stayed with his natural family that he probably would have gone undiagnosed for much longer.

WHAT?! First of all, the only reason I had to fight so hard was that our pediatrician dropped the ball--the pediatrician that I chose to care for my kids. Second, say Schmoozer had stayed with his family of origin, and still had the impaction in July. Who is to say that the Hirschsprung's would not have been caught by the medical professionals that his parents would have accessed then. To add to that, Schmoozer's paternal grandfather of origin is a Pediatrician! He spent Schmoozer's initial stay in the NICU reviewing records and making sure Schmoozer's care was up to his very high standards, I would assume he would have continued the same throughout Schmoozer's life, had he been able to, and have recommended tests and advocated for excellent treatment. Last, I know that Schmoozer's mom is a smart, savvy, lovely woman, and am certain she would have given him at least as much gumption as I did. So Phil STICK IT IN YOUR ASS!

OK, so that's not a good attitude. He had the best of intentions, wanting me to know that he thinks I'm a good mom to his grandson etc. That's all fine and good, but just don't do it at his natural mother's expense. please.