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My husband loves me....

We have a horse, more accurately I have a horse. His name is Coppertop. He is a Welsh X liver chestnut medium sized pony. He is trained (kinda) as a hunter jumper. We, me and my trainer at the barn, have been working with him for almost a year. Over the past several months he has required medical attention due to a tumor on his boy parts. Kinda funny and really sad! Poor guy had to have a good portion of his boy parts removed, not to worry he can still pee, as for other functions...well he's a gelding so he has never had a need for that activity. We took him about five weeks ago for his first surgery to UT Knoxville. Copper stayed for a couple nights and we went back to pick him up, not a huge deal but painful for the guy.



The icky part is he has been swelling on his stomach and boy parts since the surgery. So I have been doing the equivalent of cold compresses and light exercise to help reduce the swelling. Now there is good news and bad news. Good news: the swelling is almost all the way gone! Bad news: we take him back this Wednesday to remove more lymph nodes, which means more driving, more pain, and MORE swelling!!! This time the surgery is very simple and will be done on an outpatient basis, so we get to bring him back home with us.

In summary: I have a horse, he is a great jumper, I love him a whole lot, most importantly Kurt LOVES me a whole lot because he puts up with my obsession with animals!!!

Facts About Jonah's Diagnosis

Jonah has a rare disorder called Sept-Optic-Dysplasia. There are no known causes for this disorder which occurs in utero as the baby is developing. Septo-optic dysplasia (SOD) is also known as de Morsier syndrome, named after Swiss neurologist Georges de Morsier, who was the first to identify this congenital - which means present from birth - malformation that is characterised by a triad of 'symptoms' affecting the midline of the brain.

1. Underdeveloped optic nerves
The human eye contains around one million optic nerve bundles. SOD sufferers range in their vision capability, from being completely blind, to having only somewhat diminished vision. As Jonah Tyler is unable to verbalize how much he can see yet, we do not know for sure ho much vision he has. It is evident his vision is best up close and in the center of his visual field. He will be classified as legally blind the rest of his life. Jonah has nystagmus, which is the rapid horizontal movement of the eyes, almost as if they were 'vibrating'. This is the biggest outward sign that Jonah has limited vision. This condition is very common in people with SOD. Underdeveloped (hypoplastic) optic nerves cannot be corrected by surgery or medication, due to no abnormalities with his eyes, corrective lenses would not improve his vision.

2. Missing portion of the corpus calloscum.
The corpus calloscum is the bridge that connects the two hemispheres of the brain. Jonah is missing the front portion of this bridge thus making it more difficult for the two sides of his brain to communicate. The encouraging part of this is that the brain is able to form new connections through alternative neural pathways. Jonah's therapies and daily activities at home with us facilitate these new connections.

3. Hormone deficiencies (hypopituitarism)
Like the optic nerve chasm, and the corpus calloscum, the pituitary (hormone) functions are also found on the midline of the brain. It affects 70% of SOD cases. The hormone most commonly missing in SOD children and adults is the growth hormone. Jonah Tyler is tested regularly to ensure he has normal hormone function, he is thankfully not presenting with any deficiencies yet.

No one knows what cause Septo Optic Dysplasia. 1% of cases are genetic, and there are four gene mutations causing that 1% that we know of, with more being discovered every day. Jonah will be visiting a genetic doctor in the next several weeks to rule out a genetic cause. It is a highly variable condition. Children like Jonah Tyler have developmental delays, such as delayed gross motor skills and speech. There may also be cognitive impairment, thus far Jonah's doctors and therapists do not see any signs of this at this point. Kurt and I do not either, he is very bright and eager to learn new things. Autism is affecting around 30% of Septo Optic Dysplasia cases, other great news is that Jonah is not exhibiting any autistic behaviors. He loves to engage with others, especially his brother and sister.

Summer Birthdays are fun because...

1. Ice Cream can be substituted for cake.



2. Water play is a great (cheap) form of entertainment for kids of any age.



3. You don't have to invite ALL the kids in your class, just your close friends.



4. When your kids are older a weekend getaway can be used to get out of throwing a birthday party.



5. Cleaning up outside is a breeze.

How many specialists can we see in one week?

answer: four! Yep, four visits to specialists this week with our little guy.

Monday morning Jonah and I drove 45 minutes (due to traffic) to see a new dermatologist who actually looked at Jonah's skin. I know it seems obvious that a skin doctor would look at my child's skin, however our last dermatologist NEVER did this. The new derma. also talked to me about what I can do to help manage his eczema break outs, on top of all that she told me flare ups would happen no matter what we did=no more guilt. In summary this appointment was well worth the 45 minute drive.

Wednesday morning we will be getting the results of Jonah Tyler's MRI. Honestly I am terrified, crying every time I think about it. Normally I avoid crying altogether so I am pretty freaked out. We have met the neurologist before, he's the best, so hopefully it won't be as traumatic as I'm envisioning.

Thursday is what I refer to as Therapy day. Unfortunately it isn't therapy for me, it's PT and OT for Jonah. This week we will be getting a walker to bring home for him to use. I cannot wait to see him using it to walk around our house! Every Thursday we get to see a therapy dog while we are there. Oddly enough Jonah gets way more excited about seeing the dogs at pediatric rehab than our four beasts at home.


Friday morning, very very early, we head to Michigan to see Kurt's family.

Happy Birthday Hannah!

Hannah is 8 years old!!!! Hannah's birthday is just four days after Micah's, and Jonah's birthday is 20 days after hers. June is a busy month for us.

As the only girl Hannah feels the need to fully embrace all things pink, pretty, and girly. She is way more girly than I ever was, which Grandma enjoys since now she can finally buy flowery pink things for someone. Hannah is our attention seeker. She loves to perform, talk, and the focus of everyone around her. However when asked to tell a joke or sing in front of other people she gets nervous.

Here is baby Hannah at four years old in pink with her baby doll. It is crazy how much she has grown.

Hannah has beauty and brains she is just more interested in the beauty part of herself right now. She loves having her hair done, going shopping, getting her nails painted, and playing with dolls. She is very smart with a knack for remembering names and events. For example she is able to tell us all the first and last names of her classmates as well as their brothers and sisters, likes and dislikes, pets, and favorite activities. While Hannah excels at school, she does not stay interested in one thing for very long. This has enabled her to learn lots about everything. She earned straight A's this year and had great behavior!!! We are very proud of her.



She loves animals, we call her our dog whisperer because she enjoys teaching the dogs new tricks. She likes riding and brushing our horse Coppertop. Her favorite activity this summer has been cheerleading. She attended a camp a couple of weeks ago. She will be cheering for football this fall. She is going to have a lot of fun, especially because she will have a skirt and pompoms. When Hannah has the desire to do well at something nothing can stop her.



Hannah is a great sister to Micah and Jonah. She will play sports with Micah as long as he plays dolls with her sometimes too. She loves to help take care of Jonah. Making him laugh is her favorite. Hannah is super sweet and cuddly. I love that she wants to grow up to be like me and loves having Mommy and Hannah time. She enjoys helping me pick out outfits to wear on dates with her Dad.



We are excited to see what the next year brings for Hannah. We are very blessed to have her as our daughter. Love you, Bug!!!

Happy Birthday Micah!!

Today Micah is 10 years old!!!

Micah is our oldest. He is an amazing gift from God that we are grateful for each and every day. God has blessed him with many wonderful gifts. He is very athletic, excelling in every physical activity on the planet. Micah has a great arm, runs super fast, and practices hard to get better at the sports he loves. Soccer and basketball are his favorite. Being the type A kid he is, he has a practice schedule that he developed for the summer to improve his endurance. He runs up and down the street each day to be ready for fall sports. This year he is giving football a try. We are confident that he will do an excellent job.



While many people admire his athletic ability, his heart also stands out from other boys his age. Micah desires to put others first the majority of the time. For example, today for his birthday dinner he gave me two options to choose from so that I could have the one I liked best. A couple months ago Kurt was out of town and I was trying to get Jonah in bed after dinner when Micah's love for me shown through. I came downstairs once Jonah was asleep to find all of the dinner dishes done, leftovers put away in the fridge, and all of Jonah's toys clean up. After I hugged him, Micah said he thought I needed some help with everything tonight. Super sweet!!!
Here is baby Micah! He was six years old here, so cute!!!


Micah will even allow his little sister to boss him around, so that she doesn't get in trouble. He is Hannah and Jonah's favorite playmate. Micah is eager to learn new things by visiting museums, reading, or helping with projects at home. He brainstorms ideas for how to help orphans in Ethiopia and hopes to raise money to buy toys for orphanages. We know that he can do anything God gives him the desire to do. Micah has shown how the darkness of this world can be overcome with a Christ filled heart.



Micah's favorite things:
Playing outside
Traveling (to San Diego)
Basketball
Soccer
Any sports
Reading
Social Studies
Math
Cheetahs
Tigers
Bella (our Great Dane)
Buffalo Chicken Salad
Hot Dogs
Root Beer
Church

Micah has developed a great sense of humor. We took this so it would look like he was peeing on the corn, I assure you he is not actually peeing. He did go through a phase when peeing outside was very exciting, however that has kinda of passed.



We love you Micah!!!

OT, PT, TEIS, and CP

Since I have been out of the special education world for the last five years I had forgotten about all the acronyms. In the last month I have been reintroduced to them. Now I will do a quick lesson for those who are unaware what all these letters stand for and how they relate to my Jonah Tyler.


OT-Occupational Therapy. Jonah goes here for an hour per week to work on daily life skills and sensory integration. Favorites: the swing and being squeezed between pillows or mats. Dislikes: playing with slimy foods and working on his upper body strength.

PT-Physical Therapy. Also attends one hour per week to work on gross motor skills. Favorites: giant ball and singing songs. Dislikes: squats and sit-ups. *He has Ankle Foot Orthopedics (AFOs) he wears all day and will be getting a theratog (super suit) in the next week. He has begun using a walker at therapy, don't have one ordered for home yet.


TEIS-Tennessee Early Intervention. One hour a week at our house to assist with at home interventions and resources in the community. Favorites: New toys to play with. Dislikes: when the toys leave at the end of the hour.

CP-Cerebral Palsy. This is the tentative diagnosis for Jonah Tyler right now. Our neurologist was the first to say this to use last week when he completed a neurological assessment on Jonah. We have an MRI for him on June 2nd. This will show how much brain damage he has as a result of an illness he had at 6 months old. His left side is the most impacted, therefore we are expecting to see damage to his right hemisphere.

Spring

Spring is finally here! Being a Southern California girl I love the sun! I have been outside trying to get my tan back every chance I get. Thankfully I have three kids that love the sun as much as I do. Micah has been playing basketball in our driveway and soccer in the backyard. Hannah has been riding her bike and hanging out with a neighborhood friend. Jonah hangs out with me on the grass or driveway watching playing catch or investigating all the new sights.

Jonah is fascinated by the weather. This is due to being stuck inside an orphanage. He loves being rained on. He will fight me when I am trying to get him in the car in the rain. He tries to get his hand or face out to feel it falling on him. In the wind he turns into Kate Winslet in Titantic with both arms stretched out and a grin on his face. I need to snap a picture it is really the perfect impression of her.

Here are some various pictures from the last couple of weeks.

I would like a plan please!

The last six weeks have been filled with numerous doctor appointments and therapy sessions for Jonah Tyler. We have gone to all of these in an effort to determine what is going on with him. While he is a sweet, loving, smart baby, he is just slightly behind on the developmental curve. The great news is we are getting more answers with each appointment we go on and he is making lots of progress. He is a very determined little guy! We have the majority of the services he needs set up on a weekly schedule, this allows me to easily plan the rest of our week.


All of us are enjoying watching him learn new things. Micah and Hannah had fun teaching him to say "A-cho" and "bye." He is our picky eater which can be challenging at times. The good thing is he will try anything twice then you'll probably never get him to eat it again. He is sleeping great, sometimes falling asleep before we're ready for him to. He has enjoyed a couple rides on our Great Dane and likes to feed the dogs the food he doesn't want. We are blessed by him! Each night as we watch him fall asleep we are reminded of God's promises and love for Jonah and us.

Simplify

I am thankful to have my grandmother and mother's gene for ridding my house of clutter. Just as their husbands were not so excited about the idea of them going through the house with boxes and garbage bags, Kurt is not either. Last night when I told him I was going to clean out the butler's pantry he stood and watched to make sure I didn't get rid of something important. THis morning I conquered Hannah's bathroom cabinets which were full of hair supplies (go figure). Both of my older kids are used to my rampages so they avoid get too attached to anything in the house. Hannah was very helpful today. She cleaned out baby food containers to use as organizers for her numerous hair ties.
The sudden urge to clean out our house comes from feeling overwhelmed by the amount of stuff we have that we NEVER use. Really why do I need a bunch of candle holders, picture frames, cloth place mats, clothes, etc. It is all very unnecessary. My goal in this house wide purge is to have a garage sale in which I earn money for things I do care about such as family activities and vacations.

I hope to post before and after pics. Although I forgot a before pic with Hannah's cabinet, here is after the mass of hair products were tamed.

Loss

Loss is a huge part of adoption. Most people tend to think of adoption as only a good thing, which it is, but there are losses when an adoption occurs. There is loss for the biological family of the child because they will no longer have a relationship with their child (at least in the case of my kids). The new parents suffer the loss of missing out on part of that child's life. For our oldest two we missed a large chunk of their lives. With the arrival of Jonah, Micah and Hannah have been dealing with some grief issues. Last night at dinner we had a mini therapy session with them to work through these issues. It is difficult as a parent to see your children so sad because they are missing something that we cannot get back for them. Baby pictures are a big deal to them, they are very upset that we don't have any of them. Another since of loss comes from the experiences Kurt and I are having with Jonah that we missed out on with them. On top of these issues they are struggling with the fact that Jonah is almost the same age Elijah would have been had he lived. It is making their hearts ache for their baby brother.

In the middle of our sorrow I am thankful we can turn to God to walk with us. I mourn the losses that our family has gone through at the same time I have peace in knowing that in Christ we have eternal life. As we told the kids last night, all of this pain and sorrow will be gone in heaven. One day we all will see the "video" of Micah and Hannah before they were with us, we will hold and play with Elijah just as we do with Jonah now. One day our bruised and broken hearts will be made whole again when we are united with our Savior.

Rejoice and be glad, because great is your reward in heaven-Matthew 5:12

Toddler Craziness

Sorry for the delay in posting. We have been spending lots of time hanging out as a family. Jonah Tyler is an amazing new addition. He adores his older brother and sister, has fun with his Daddy, but loves his Mommy the best!

Many of you are going to laugh at me but taking care of a toddler is a lot of work! Kurt and I are both exhausted most of the time. Here some of the ways our lives have changed:
1. No more sleeping in on Saturdays
2. Our clothes have snot, drool, and various other things on them.
3. Home is the easiest place to be
4. Dogs no longer freely roam the house
5. Toys in the living room, kitchen, and bonus room
6. Have gotten very familiar with the baby section at Target
7. It takes at least 10 min to get ready to leave the house
8. Kids music playing in the car
9. In love with a stroller and ergo
10. If I get one thing done on my list in a day, I'm doing good.

With all that to say, we would not change a thing. Last Sunday in church we had Jonah Tyler with us. Kurt and I were both in tears thinking about how just a couple weeks ago we were praying for him to be with us. God's hand has been on Jonah Tyler's adoption since the beginning. We are so thankful for our three amazing gifts from Ethiopia.

We are leaving!!!!

We got word this morning that we have been approved to travel!!! We leave tonight for D.C. then on to Ethiopia in the morning. This is beyond short notice!!! A friend told me we would find out at the eleventh hour and she was right. Thank you for all of your prayers. We are looking forward to introducing you to Jonah Tyler. Thankfully we had family on stand-by so the house, kids, and dogs will be well taken care of.

Seriously?

Lately I have noticed that I say "Seriously?" quite a bit. When my kids do something stupid...seriously? When another snow day is called....seriously? When the dogs get mud all over my kitchen floor....seriously? When we received no news from the US Embassy on Tuesday of this week...seriously?

While some members of my family may get annoyed with my use of this word, I think it accurately reflects my feelings at that moment. Sometimes "seriously?" is addressed to a particular person such as a child who forgets to put on their shoes for school other times it is directed at God. When directed at the Creator it is a condensed version of "Really another thing is going wrong? I would like something to go right, please."

Reasons I like the word:
1. Is not and does not sound like a bad word
2. Can be directed at myself or someone else
3. Makes me feel better

So when Tuesday ended with no travel approval, you can guess who "Seriously?" was directed at...God and the US Embassy. We would very much like some GOOD NEWS this week. Needless to say my stress level is very high which is good for my waist line (I've lost 10 pounds) but bad for my sanity.

I am thankful for everyone praying for us and the donations we have received to take to Ethiopia when we do go.

A Rough Week

This week has been very hard on me. On Wednesday my Grandfather passed away, leaving my heart with a hole that won't be filled until I see him again in heaven. He was a spunky caring man who always put his family first. It is difficult knowing that I can't just pick up the phone and call him. Over the past ten years him and I had developed a special bond that I will miss greatly.

We are awaiting clearance from the US Embassy to travel to get Jonah Tyler. This could come anytime before next Friday, which is when we would have to leave. We are praying for an Embassy date of Jan 25th. Your prayers are appreciated.

Good News

On Monday evening we received a phone call from our case worker, Ben, way after office hours. He told us that the CWAE office received the new more detailed police report the Embassy had requested. They are actively translating it and getting our documents prepared to be submitted to the US Embassy on 1/11!!! If our paperwork is okay we could travel for our agency's next Embassy date on 1/25. This puts us leaving on 1/21!!! YAY!!! We are optimistic that those dates will work out and Jonah will be in our arms by the end of January. Please continue to pray that he remains healthy and safe, as well as for an Embassy date of 1/25/11.

Feeling Defeated

When I woke up this morning I was hopeful that we would get good news about our Embassy Date. It is now the end of business for our agency...a whole lotta nothing!!!! I am upset because we have not heard anything about our son or his case in two weeks. My feelings are a mixture of anxiousness, concern, anger, and sadness. We would like to know what is going on and where his case stands, most of all we want him home safe with us.

I could go on and on about how bummed out I"m feeling right now, instead I will post some pics of our boy.