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Tuesday, September 19, 2017

We Have Hope Once More -Kiana's Lyme Disease Journey


Yesterday Dean and I took Kiana to a new Lyme doctor. A special thanks to everyone who prayed for us, God graciously answered those prayers! A few weeks ago, Kiana's previous LLMD told me there isn't anything more he can do for her as he isn't comfortable placing another PICC line since she developed a clot so quickly after her previous line was placed. The best he could do was to double her antibiotic and see her in a month. That didn't sit well with us, so we began looking for another doctor. How many times have we looked for doctors and therapist's over the years? Sometimes I wish I would have kept track, although it is probably good I didn't. 

Anyway, we had high hopes for one doctor but he failed to come through for us. Last week was particularly bad for Kiana and we realized we need to find a doctor now. Through much prayer, frantic research and phone calls, we found a doctor who, after hearing our story, agreed to stay after hours to see Kiana. Before contacting this doctor I had sent an email to ILADS asking for recommendations. I received a return email Monday morning and the new doctors name was included in their list. That felt like a direct confirmation from God that we were choosing the right path.

The problem many Lyme patients face is that the CDC claims that  Lyme disease can be treated with a round of antibiotic and that long term Lyme is very rare. We were told by a leading hospital that if the symptoms last longer than 4 weeks then it is a psychiatric problem versus a medical problem as the antibiotic will have eradicated the Lyme. This means that doctors who treat patients outside of the CDC's recommended treatment protocol, place themselves at risk, especially if the patient develops complications like Kiana did. As a result many Lyme doctors who use both medical and alternative treatment are not affiliated with any insurance companies, as that is often who will report the doctor. It is a complicated mess, one that often leaves Lyme patients hanging in limbo.

In light of all this, plus knowing Kiana needed help quickly, there was a lot hanging on this appointment. I was afraid the doctor wouldn't listen to our concerns, afraid she might brush us off or worse yet suggest Kiana needs psychiatric care. LymeMD explains why psychiatric drugs are typically not a good fit for a patient with neuro Lyme. However my biggest issue with these meds is the fact that I have been trying to wean off one for nearly three years now and have horrendous withdrawal. I refuse to put my child through that unless absolutely necessary. You can read about that here.

I have taken our children to countless appointments alone, several of them were even out of state. But for some reason this appointment intimidated me. I was so glad when Dean said he can take off work and go with me. Turns out it was good he did. He was able to remember many details of Kiana's illness which I had forgotten. The doctor checked Kiana very thoroughly and explained what she was looking for as well as what she found. She gave a list of lab work to get completed, along with supplements to add to Kiana's daily regimen, explained what our options might be as far as treatment depending on what the lab work shows and answered our many questions. 1.5 hours later we were ready to leave and for the first time in a long time we felt hope. Hope, my friends, is a wonderful thing, especially when it has been missing!

Kiana has another appointment next week at which time the lab results should be in and the records we need will have been faxed to the correct places - at least that is what we are hoping happens! Please continue to keep Kiana in your prayers, she was listening in to the possible treatment plans and was not impressed!







Monday, September 11, 2017

When Parenting Your Child With FASD Is Overwhelming - Living With FASD

If you haven't already liked Jeff Noble's FB page; Fetal Alcohol Syndrome Forever With Jeff Noble, I urge you to do so. He shares inspiring, educational quotes about FASD. These quotes are often just the thing I need on any given day. 

Here is today's quote:
The intensity of Fetal Alcohol can be so overwhelming, caregivers often have to trick their, "Fight or Flight" response several times just to get through a day. Remember your not the only one who feels like this. "Like" if you agree, "Share" if you care.


How well I can relate! Parenting children with trauma, especially when they have FASD as well, is a daily lesson in patience and squashing ones own reactions to the drama.

On Saturday Dean put driveway sealer on a section of our drive. He put a broom along the bottom side as a visual reminder for the children not to ride their bikes on it. Joseph wanted to get past that spot and had an awesome meltdown because he didn't know how to do so. I told him to go through the grass and he started crying and screamed that he isn't allowed to drive through the grass, so what is he supposed to do?!? I felt my blood pressure rising because this was totally irrational. I forced myself to calm down and speak slowly and distinctly. Eventually I helped Joseph understand that he is allowed to ride his bike through the grass and there is nothing to be so upset about. I have no idea where he got the idea that he isn't allowed to ride through the grass, so I chalked it up to FASD brain.

A few minutes later he started up again. He was bashing his precious bike into the porch and yelling that we should get rid of the stupid old thing because it is just a piece of junk! I went out to investigate. Turns out he wiped out going around a turn to fast which made him cross. He wasn't back on his bike very long before Kobi walked in front of him and made him wreck again. I couldn't get through to him so I took his hand and we went for a walk. He was wailing and my blood pressure was rising again. The walk helped me but he was as angry as ever when we returned to the house. He wanted to get rid of Kobi and put his bike in the trash. 

When Joseph gets overwhelmed, over stimulated or over tired, look out! Everything and anything will go flying, including his words. I get so tired of it happening over and over again. When I hear him start up yet again, it is tempting to go into fight mode.

When your child has meltdown after meltdown over seemingly irrational happenings, (having several children who do this only compounds the problem) it is so tempting to join in their tantrums. Don't ask me how I know!

Sometimes it feels like all I do is defuse rages, go to great lengths to avoid meltdowns and talk little people off the ledge. It is essential to keep your cool because your child WILL regulate off of you. However no matter how essential it is, it is still incredibly hard to do. Jeff's post this morning was just what I needed. Somehow the reminder that I am not in this alone made all the difference.

So if your child is yelling, melting down or raging, I get it, you aren't alone!

Friday, September 8, 2017

Don't Ask My Child To Fly - Living With FASD





September 9 is National Fetal Alcohol Awareness Day

What is FASD - Fetal Alcohol Spectrum Disorder?
- an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may physical, mental, behavioral and/or learning disabilities with life long implications. -FAS DPN

The majority of my readers are the parents of children who either have FASD, are suspected of having it or have behavioral/mental/emotional disabilities. In light of that, I am not going to write post on preventing FASD. I was going to highlight some of the difficulties and unique challenges those with FASD and their caregivers may face in life, but I came across this poem and it describes parenting a child with FASD, perfectly!

Don't Ask My Child To Fly

Don't ask my child to fly
for he has no wings.

Don't ask my child to see the glint on the eagle's beak,
for his vision has been diminished.

Don't ask my child to remain calm amid the din,
for her ability to screen out the noises has been taken away.

Don't ask my child to be careful with strangers,
for he is friendly with everyone and prey for the unscrupulous.

Don't ask my child the "settle down,"
for the clock which works for you and I, does not exist for her.

Don't ask my child to not play with the toys of others,
for he has no concept of property.

Don't ask my child to remember you tomorrow,
although you met today.

Don't ask my child to heal your wounds,
for her hands cannot hold a scalpel or sutures.

Don't ask my child to meet the challenges set by society,
for you have denied her the tools.

Don't ask my child to forgive you for standing idly by,
while he was being tortured in his mothers womb.

for he will,

        but he may not. 
               - Bruce Ritchie 1997

Imagine for a few moments if you will, a teenager/adult with no sense of boundaries. 

Imagine a child who has no sense of "stranger danger."

Imagine a teen/adult with no sense of property.

Imagine a child/teen/adult who has no idea what is appropriate in society.

Imagine someone who wants to fit in but due to his inability to understand world or read social cues, finds himself constantly searching for someone to be his friend. Often in that search, he meets up with people who willing take advantage of him.

These are the people who are easily exploited and can be lured into dangerous situations. This is why we as parents are so vigilant and why the future looks so scary.



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Wednesday, September 6, 2017

Can I Trust You With My Heart?

A brave young lady, Isabel Yates, wrote the following poem. The poem is a description of a hurting child but I feel it can be used to describe many hurting people in this world.

Children and adults who have suffered abuse and trauma will unconsciously ask, "Can I trust you with my heart?" Sadly, many times the person on the receiving end, fails to realize the significance of the question. When someone who has been neglected/abused asks for a few moments of your time and in your busyness you turn them down, they may feel they cannot trust you with their heart.

We need to be kind and respectful when people share their heart. You are the recipient of an incredible gift. When your heart has been broken and trampled, you do all you can to protect it from further pain.

Sometimes people will share unspeakable horrors, it will make your stomach clench and bile rise in your throat but be careful that only empathy shows on your face. If someone feels their pain is too intense for others to hear they won't share and they need to be able to talk freely in order to heal.

Cry with the hurting ones. Tears are a universal language.

People need someone to walk beside them as they explore the unknown. Go with them, hold their hand, check in with them and above all assure them that you are there. Then be there!

Sometimes the pain is more than someone can bear. They need you to hold their head above water, lest they sink. Sometimes this means physically standing by them until the crisis has passed, sometimes it means making decisions for them, other times it means being strong and holding them accountable despite the pain.

If someone shares their grief, handle it as the precious gift that it is. When someone confides in you, they are trusting that you will be respectful, careful and loving as you help carry their pain.

Sometimes a person will not know why or exactly what they are grieving. They may throw out vague hints, or they may be visibly sinking, it is our responsibility to reach out in love and walk beside them. You never know how many lives you may save, how many hearts you may aid in healing nor how many hearts your compassion may touch.

Walking alongside the hurting is not easy but the blessings are immeasurable!


Monday, September 4, 2017

Happy Birthday Lia

Happy Birthday Lia!!!!

                                  How you have grown!









Lia's long awaited 6th birthday finally arrived! Her siblings were almost as excited as she was. One child said we should have more children so we could have birthday parties more often!



Cake, ice cream and a pogo stick made her day special, but best of all was the special box and video phone call from her birthmom.

We have an ongoing relationship with Lia's birthmom. Many people find the thought of an open adoption scary but it has been such a blessing for both Lia and Dean & I. Knowing her birthmom loves her has been a source of comfort and security for Lia, and I believe it has helped her bond with Dean and I. She considers us mom and dad but her birthmom has a special place in her heart, which is right and good. Rather than feel threatened by it, Dean and I have encouraged that relationship. Her birthmom has become an extended part of our family and we feel honored that she encourages Lia to love and respect us. We are blessed! The following poem doesn't exactly describe our situation, but it touched my heart and I trust it will touch yours as well.

THE LEGACY OF A CHILD IN AN OPEN ADOPTION
Once there were two expectant mothers.
One carried and cared for you beneath her beating heart.
She became your Birthmother.
The other carried the hope of you within her.
She became your Mom.
As the days passed and you grew bigger and stronger,
your Birthmom knew she could not give you all you needed after your birth.
Meanwhile your mom was ready and waiting for you.

One day your Birthmom and your Mom found each other.

They looked into each others eyes and saw a friend.
Your Birthmom saw the life your Mom could give you.
Your Mom saw how much your Birthmom loved and cared for you.

They decided that what you needed was both kinds of love in your life.
So now you have two families, one by birth, one by adoption.

And you have a home where you can get:
 your questions answered,
your boo boo's bandaged,
your heart aches soothed,
and much needed hugs.

And a place where you can find:
answers to your questions,
your image in the mirror,
a part of yourself,
and much needed hugs.

Two different kinds of families,
Two different kinds of love,
Both a part of you!

- Brenda Romanchik