Friday, May 30, 2014

Older child adoption

No, we are NOT adopting again. But based on our experiences there are huge differences between adopting a younger child and an older child. For me the bonding process has been much more difficult. With Sabrina it was very natural. Even though she was 17 months old, she felt even younger. We were the ones that taught her to walk and talk. Almost from day one she has felt no different than our biological children. Even though I am not a huge physical touch person I think it was so valuable to carry her, snuggle her, tuck her in bed, etc.

Having missed the gradual bonding process with Teme, I am still at a loss. Having been the main caretaker for Noelle and being pulled in so many directions our survival mode has been, Scott takes care of Teme and I take care of Noelle. We have managed to maintain shared parenting of Sabrina.

So here I am. Trying to live with and parent a child that sometimes feels like a stranger. HELP! I know that some adoptive parents read my blog. If you have suggestions please let me know. The counselor I am seeing does specialize in adoption issues so I am hoping this will help in time as well.

Another adult in the family!

I can hardly believe it...Noelle turned 18 on the 28th!

This is one of my favorite pictures from when Noelle was little. The funniest part is she basically refused to participate in tee ball after this picture was taken.

Now my beautiful girl is 18! Crazy!

We had lunch at Sakura, a Japanese grill, with Scott, Sabrina, Teme, Grandma and Grandpa and Aunt Karen. Then Noelle and I took an overnight trip to Des Moines. We were able to book a hotel with our points from our long stay in Arizona. Jake met us for supper at Biaggi's. (They have a gluten free menu.) Noelle used her birthday money at her favorite stores, Lush and Vera Bradley.

No more signing medical forms:)

Stop the ride...

we want to get off!

Thanks for your continued prayers. The flight home went as well as it could have. We were met at the airport by Scott, Sabrina and my sister, Karen. They came bearing a sign, flowers and balloons! We arrived home to more balloons and Noelle's room all decorated! Grandma and Grandpa, Jake and Teme welcomed us home.

The first two and a half days were great. Noelle drove for the first time in a long time! We attended Sabrina's patriotic program and our first graduation open houses of the season. But by Saturday evening Noelle was in tremendous pain.

I think readjusting to the chaos of home has been difficult for both of us. The backward/forward progress of trying to become asymptomatic has been frustrating. As always, the emotional symptoms are harder to handle than the physical. Honestly, we are both dealing with anxiety and depression. Noelle is continuing to implement the supplement program that was suggested with her neurotransmitter testing. I have decided it is time for some counseling. Seven years of dealing with chronic illness and two adoptions may be taking me over the edge.

Friday, the 6th, will be our first telephone follow up with Noelle's doctor from Arizona. Noelle is definitely doing better than before we left. We have been telling people 20% better. She has not used the wheel chair for at least a month. She spends more time up and around than before. Her pain leaves more quickly than it did before treatment. Her emotional symptoms are worse, more akin to what they were when she was younger. We followed up with her neurologist earlier this week and she said the pressure has decreased. Noelle does have to continue on the medication and we will follow up again in three months. Currently she is fighting a bad cold which is not very welcome.

Noelle has been able to do some school work! She completed one of the eleven credits she has left. YEAH! She also applied for an apartment in the fall. She is so ready to be independent. We are all praying that she is assigned great roommates and that her symptoms will allow her to live comfortably on her own.

And so the ride continues!

Tuesday, May 13, 2014

Travel Time!

Monday, Noelle did not make it to treatment. Still lots of emotions and pain! We did make it today. We got to say goodbye to all the staff and patients we have gotten to know during our stay. So many people with so many great physical needs, cancer and lyme.

Now that we have started packing Noelle has started to become VERY anxious about travel tomorrow. Please pray with me that God would be with her in a super-natural way. It will be a lot to get all our luggage there and it will be difficult for both of us if her emotions are out of check. Noelle can have full blown panic attacks. Please pray against this!

Sunday, May 11, 2014


Feeling so blessed to day! Hated being away from the rest of my family, but my little girl treated me like a queen!

Presents from Lush, of course!

I beautiful scarf that says thank you in many languages.

The yummiest smelling hand lotion, with proceeds going to Ethiopia!

Then she gave me a wonderful pedicure:) And I reciprocated. We used all the fun spa things that Teri and Char sent to us. (Thanks again ladies.) By the way, in a pinch you can do a foot soak in a dutch oven. Probably best for sizes 9 and under.

We decided to do a late lunch/early supper. We went to a fantastic restaurant with a huge menu! Scottsdale Station. We first went when Scott and Sabrina were here. We still had the brunch menu so I got the Crab Benedict, with an included glass of champagne. Noelle was so excited to have the Filet she had had previously. Unfortunately there were some issues but the manager comped her meal so that was amazing. Then they have bite sized desserts so we shared cheesecake, lemon tart and carrot cake!

Next up, a trip to World Market. We had never been there but we will definitely be going back! Apparently they have one in Des Moines. So much fun!

Apparently Noelle thinks she will be baking in her apartment in the fall. She wanted to buy everything in the store, so we will definitely be shopping there again later in the summer.

Table runner for my dining room table. Maybe it will distract people from the hole in my wall. (From fixing the leaking pipe. I think they are actually repairing it this week.)

So truly a great day! Love my babies!

Happy Mother's Day!

It's true! Thanks mom for all you have done all these years and for all you continue to do! (Especially how you have taken care of my family while I have been in Arizona!) I LOVE YOU!

Just two days of treatment left!

Wednesday: We did not make it to treatment. Noelle's stomach was still a mess.

Thursday: We met with Dr. Oertle for our "exit" appointment. He really is wonderful. Great at explaining things and very positive. He is concerned that Noelle is not feeling better than she is, as are we. However, he continues to encourage us that many patients do not begin to feel really well until they are about a month out from treatment. He did a wonderful job of explaining further the results of Noelle's neurotransmitter test. He feels confident that balancing out her system is going to be a tremendous help. Turns out one of her lowest numbers is connected to the "fight or flight" response, which may explain her almost lethargic nature. (Obviously a lot of that is caused by how crappy she feels, but this is another piece of the puzzle.)

The decision was made to discontinue all antibiotics and just give Noelle treatments that will build her system up until we leave.

Friday: Treatment went pretty well. However, in the evening Noelle developed an extreme pain in her foot, ankle and later leg. After lots of medications she was able to get to sleep. This is very discouraging since her pain has appeared to have improved.

Saturday: Noelle slept until noon! We soon realized that although she had been able to return to sleep, her pain was not gone. After speaking with Scott I become concerned that the pain in Noelle's leg might be a blood clot. Noelle does have a blood clotting factor. We (I) decided we should go to the E.R. to get an all clear. We did go, and we did get an all clear. After being interrogated by a doctor about Noelle's Lyme treatments, pursuit of pain relief, etc. It was very frustrating. I felt like it was my fault and that I should have never mentioned it. In general we have gotten empathetic responses to Noelle's Lyme disease. Every once in a while we get someone who is not willing to entertain the chronic lyme diagnosis. Very frustrating. He did order an ultrasound of Noelle's leg so we can be pretty confident there is not a clot despite the unusual pain.

She is still in considerable pain so praying that she can get to sleep tonight and that she will be much improved in the morning.

Tuesday, May 6, 2014

Five days of treatment left!

Not a great day today. She is not feeling well at all. The usual culprits, pain and stomach upset. We did make it to treatment. She started with Zofran for nausea and a bag of fluids. Not feeling too much better she did about half of her suggested treatment plan. She made it through Oxybosh, Rocephin, Silver and Amino Acids. She skipped the Hydrogen Peroxide, EDTA (Cleation), and Zithromax because they all upset her stomach. She skipped the chiropractor and sauna because they are at the end and she feels horrible.

Finally, contacting a third party insurance biller today. Most of her treatment here is not submitted to insurance. I think only x-rays and labs are. Scott intended to take care of this but since our house has fallen apart since we have been here we decided I should start pursuing this.

Please continue to pray for Noelle today and for the insurance process. I honestly do not have much faith in our insurance company. They have a pretty specific Lyme treatment policy and we have used up all those funds. But God is good, and He has been faithful to provide for this treatment.

Monday, May 5, 2014

Six days of treatment left!

We did get the results of Noelle's neurotransmitter test back. We haven't actually talked to the doctor about the results yet, but it is obvious from the results that there are definitely physical reasons that Noelle struggles with her emotions. Every single neurotransmitter was outside of the desired range. Some of them were within the reference range but not within the desired range. For instance, the reference range for Serotonin is 57-306. Noelle's level was 71. Another example is Taurine. The reference range is 52-1025, Noelle's level is 63.2. Most labs and doctors prefer that results be in the middle 50% of the range. The labs that run the levels have made recommendations for specific supplements to correct her levels. She will be starting those this week.

Serotonin regulates intestinal movements, mood, appetite, etc. Taurine is essential for cardiovascular function and function of the central nervous system. Those are just two of the levels that are off. The test ran for twelve neurotransmitter levels. The doctor felt that this information was critical to Noelle's healing. It is hard not to wish that this test was run years ago!

Friday was Noelle's last IPAC (insulin) treatment. During the course of her treatment she had 13 of these treatments. That had to be very hard on Noelle's body to drop her insulin levels three times a week, give her antibiotic then raise her levels back up within about 90 minutes. I just pray that these treatments worked their magic and killed the Lyme lurking in Noelle's brain. This treatment is one of the treatments that we definitely could not get at home. I don't know where else it is available.

As we look at Noelle's last six days, all of them are "long" days with lots of medications that cause stomach upset and other side effects. Please pray that Noelle can tough it out and go each day for treatment and make it through all the treatments each day. She continues to struggle with pain and a general yucky feeling. It is discouraging many days that she is not feeling better. We do see patients that obviously improve during their treatment. It is hard not to ask why them and not her/me?

We are clinging to the doctor's vision that after she returns home and is off all of these medications her body will recover and she will fully heal! Please join us in praying for this!

She's tough!

Obviously, I totally knew how tough Noelle is. But she proved it again on Saturday. It could have been a very tough day emotionally but she made a diversion plan and we stuck to it and she did great! First she got her third tattoo. Sorry, mom.

She chose the position so that she can see it when she is praying. I am a little worried about when she turns 18. Thankfully she is broke:) Kidding, all her tattoos are very tasteful!

Next a little shopping. We made it to Sephora where she got her eye makeup done. Very smokey and beautiful. Sorry, we didn't get a good picture. Then Gap. And on to the movies.

Great movie, full of surprises! The only sad part of the evening is that by the time we returned home Noelle was in a lot of pain! When will it end:(

Thursday, May 1, 2014


Apparently, yes. While Noelle and I have been in Arizona Scott has been fighting a battle with our house. I am not sure who is winning. By all accounts Scott is putting up a valiant fight. There has been a broken window, broken washing machine, water leak in Teme's room. And now mold. Yuck! Unfortunately the cause is a leak in a pipe that runs from our attic to our basement. The repair has involved opening my dining room wall, ripping out the basement tub and tile, and beginning the removal of the carpet in our basement. To eliminate some further risk we (Scott and his buddy, Brent) will be removing all of the carpet in the basement and staining the concrete rather than replacing it. We will also be replacing the tub and tile with a one piece unit to limit further risk. Thanks to everyone that is helping with this project!

Obviously mold is horrible for your health and we don't know what part this may have played in Noelle's illness. Her room was in the basement for quite a while, right where all of this mold has been discovered. We are very happy that we are not at home during the remediation process. Hopefully things will be in a good place by the time we return. (May 14th! Hallelujah!)

Lyme Awareness

Treatment week

Monday: Woke up with tremors. Very scary. Prayed against seizures and received valium at the clinic. Noelle never did develop full seizures. Thank you, Jesus! Thanks to everyone who prayed for her. I am very nervous about this happening while we are here. After treatment, she unfortunately fought a very upset stomach all afternoon and evening.

Tuesday: We did not make it in for treatment. Never really sure what combination of emotional and physical symptoms collide to make her unable to go. Later in the day she said her body just couldn't take any more.

Wednesday: Decent treatment day, an IPAC day (insulin treatment).

Thursday: Prom day! In the midst of all the celebrating Noelle had two new treatments today. This was the first day for her new antibiotic. They stopped her Doxycycline and started Zithromax. This upset her stomach severely and had to be administered very slowly. I am guessing it took an hour and a half for the bag. She also started an amino acid treatment. I am assuming this is in response to her neurotransmitter test. However, no one has told us the results of the test so I will have to pursue the details tomorrow. She had her third chiropractic treatment today.

She just told me she wanted to cut her head off and rip out her stomach, so I don't think she is feeling very well right now:(

Friday: Should be our last IPAC treatment. Will be checking into the neurotransmitter test results.


Surprise! Knowing that Noelle was missing her prom this weekend, the nurses and patients at Envita hosted the Envita prom for Noelle! It was so wonderful. I don't think Noelle stopped smiling until sometime early afternoon:)

Heading down the hall into her treatment room. The window says, "Welcome to the Envita prom, Envita angels".

We really should have gotten a picture of the table later when it was overflowing with gluten-free, dairy-free yummy food! She got two bouquets! One from her nurse, Roz and one from a fellow patient, Catherine. They actually tried to get a corsage. We also didn't get a good picture of the ceiling which had lots of balloons and streamers. But here is her pink IV pole.

Noelle and Jasmine, one of her nurses.

Patricia, a fellow lyme patient, even brought Noelle a dress to wear and curled her hair! She blew up lots of balloons and put confetti in them to represent the lyme spirochete.

Candy is also a lymie. Candy hosted the Easter event we went to. Today was her last treatment day. We will miss her!

We cannot thank everyone enough for making today such a bright spot for Noelle! Thanks to her nurses, Roz, Jasmine, Melissa and Grant (though the girls said Grant didn't do anything). Thanks to all Noelle's fellow patients who brought food, presents and good cheer: MaryBeth and Kelli, Patricia, Candy, Alesandra and family, Josie and Tory, and Catherine. So sorry if I forgot to mention anyone! You are all cherished!