Friday, August 21, 2009

What Next??? Or Pity Party!!!!


I have found after this week I have begun to question what next? and why?
On Monday morning Stephen left to go back to Wangaratta. This was after him being home for over a week.

On Monday night the two older boys had been up late doing assignments and then relaxing after a hectic week previously with due assignments for Uni.
I also was up late doing some research for feast days for the children's lessons.

In the early hours of the morning I heard a huge thump and looked up into the family room where Moran was asleep on the lounge. Now the reason she was still asleep on the lounge was that she had fallen asleep there while we watching Hogans Heroes together as a family. Due to her waking up very violently when she is taken up to bed form this position on the lounge I had left her until I was going to go up.

As I looked up I could see her whole body jerking violently and hear her gasping for breath. I raced up to her and picked her up. At this point she stopped jerking and went limp and unconscious. Does the word panic spring to mind.
Well needless to say I called for our older two boys to come quick, which they did along with most of the other children.

Perhaps you think I over reacted. Well perhaps I did, but we had had this happen about 4 months ago resulting in Moran being taken to the hospital in an ambulance. Well, not exactly; as the Ambos managed to bring her around with Oxygen she started screaming and would not go in the ambulance with them. Consequently Kynan and I, along with Arwen who was only 2 months old, drive to the hospital with the ambulance following behind in case we needed them.

As before we called 000 and asked for an ambulance to come. This time it was worse due to the fact she did not seem to be breathing properly. How slowly the time passes when you need medical aid to be there.
Of course you have recognised that Stephen is not home with us, as he wasn't last time either.

As before Moran refused to go to hospital in the ambulance and Kynan, Arwen (who was still awake, and had been disturbed all evening, in some ways assisting me with staying up late.) and I got (dressed first) and went in our car to the hospital.

When we got there after the admission process Moran was seen by a doctor and 2 nurses. We went through the retelling of what had happened once again and let them try diagnose her.
As this was the second tome this had happened in less than 5 months the doctor seemed to take it a little more seriously than the Doctor we had last time, who was only interested in the fact Moran would not let him examine her.

Which brings me to the next part of the story.
Moran is 7 years old and for all her life she has what I have termed "sensitivity" issues. She seems to be sensitive to touch, sound, smell, hearing and taste to a lesser degree.
None of our other children have displayed these characteristics.

From her very early weeks Moran would not allow any one to hod her except me. Very occasionally when would let Stephen hold her and the only other person was Kynan.
She cried a lot as a baby and was a fairly demanding baby.
As she grew older this did not change and now even still if any thing is wrong she prefers to have her mummy.

Having her hair done each day is a little trying to say the least. Even when I am as gentle as possible brushing her hair she invariable ends up crying if not yelling or screaming.
We have in the past tried to deal with this and tried to distract and reward and admonish her for this to try and change the behaviour.

I had at last come to the conclusion that she really could not help this (even thought I had kept hoping and trying to get her to change, I did think that in reality she could not help it).
Moran reacts in a "bad" way for use of a better word if she is touched, even lightly unexpectedly.
She is quite happy to initiate contact but does not like her "person boundaries" to be invaded unexpectedly.

So on both her occasions at the hospital and last week at the dentist, plus numerous other doctor visits Moran did not want the medical staff to touch her. Now some staff can deal with this quite successfully and others can not. Fortunately this time ( unlike last time) we had some medical staff who were able to let her gradually allow them to examine her.

After the examination of which I was so proud of her, the doctor wanted to keep her in overnight (well the rest of the night), and see the pediatrician in the morning as well as take blood samples etc. So Kynan drove home to a house full of wondering children about their sister and an older brother who was waiting up for us.

We had a very restless night at the hospital.
Moran was vomiting and had some gastro symptoms as well as being on edge and waiting to go home. Arwen was not settling and every time I seemed to drop off one of the two girls would need me.
So towards 6 am the time came for blood samples and I was once again very proud of how Moran reacted. She did not scream and kick and fuss. She did cry and was very pleased that the nurse had said she could.
At about 8:30 am the pediatrician came to see her.
When I heard which Doctor I thanked God because we were familiar with this very gentle doctor who was a locum when we needed a paediatrician for Arwen. She had left as soon as Arwen had no more visits with her and I was surprised she was back again. But so very grateful.

After talking with me and examining Moran again (I keep saying how good she was because for her she really was) the doctor said she believed Moran had two different issues.

1. The seizure she had had was confirmed and most probably she had had one previously. We were fairly sure she had had a seizure both times, hence our concern. However the Doctor said that unless a medical person actually eye-witnesses a seizure that it would not be confirmed 100%.
Moran has to have an ECG( in regards to the seizures) and I can't say we are looking forward to that at all
but

2. The second diagnosis the doctor said she felt was more of a concern.
She said she believed that Moran has Extreme Anxiety Disorder. Well what can I say. I don't know exactly what they means for her.

The doctor said she lives her life in a constant state of anxiety which manifests itself in the symptoms we see every day. I haven't gone into these here as it seems to much for me to write and explain about.
The doctor said she had never seen a child so petrified as Moran had seemed (and I thought she was so well behaved) and after more talking said she would like to refer her to Child and Adolescent Mental Health.

So we have to wait for them to contact us and work our way through this. I can only feel so sad for our sweet little girl at what the doctor said she was going through. I cry when I think about it and pray we can help her over come this.

So my pity party sounds like this:
Why can't we sell the house and be together?
Why does this have to happen when Stephen is away and I have to cope with it all alone?
How can the children grow up properly without a daddy here to help and support them?
Why can't he be here instead of missing out on developing a relationship with them?
Why don't we have a support network here when we need one?
What do we need to do to get our lives back to normal?
Why does it have to be so challenging for us?

Well I think that is enough for now.
If you have read to the end of this could I ask that you pray for our family and especially for Moran. That we can sell our house and be reunited and Moran will get the help she needs quickly.

And if I can lay my burdens before Our Lord and remember that he cares more for me than the lilies in the field and that our Guardian Angels will help and protect us it will be all right!
Wont it?

Blessings,

25 comments:

Kim said...

Lord have mercy! I will especially remember Moran and your family in my Rosary tonight. :( *many hugs and prayers*

Shawntele said...

Gae, I am on my knees in prayer for your family; for the health of your beautiful daughter, the sale of your house and for your family to be reunited soon. God hears your cries, Truly♥

GrandmaK said...

May God bless you and keep you all! I understand how you feel. This always happened when Ron would be away too. You feel so alone and there was no family to help...Praying for you! Cathy

Sarah said...

Oh, Gae. Be assured of my prayers. Peace be yours, friend- especially during this trying time!

Marilyn said...

Dear Gae

I am praying for you and Moran and all your family. Praying that you can all be together soon. Hugs

jenmack said...

Oh my, Gae!

I'm sending digital hugs and chocolate tonight...and real prayers! May Our Lady wrap your family safely and securely in her mantle so that you are assured over and above everything else of the peace that comes from living in God's will - no matter how painful and utterly mystifying it is at times.

Asking dear St. Dymphna to intercede especially for your dear Moran!

Many hugs!
God bless you, Gae!

rox said...

I am praying Gae

'Aunty' Trish said...

Gae you're doin a mighty job. Just relax. Your house will sell when the right buyer comes along. Your children will grow up properly - they already are exceptional, many grand families hardly saw Daddy ! They had a mighty Mummy ! ...and you have all the support network you will ever ever need - the other family members, so don't let them hear you complaining.

God Bless,

P.S. ever tried chiropractic care for the little ones ?

Gae said...

Thank you all SO SO SO much.
I am so grateful for your support.
I was a bit concerned I would come across wrong and I do appreciate all your support and prayers.
God Bless

Gae said...

Dear Jen,
What is St Dymphna the Saint of? I have a vague notion of her.
Or is she a special one for you?

Gae said...

We have tried chiropractic care for Arwen and I did find it workde. But the logistics and cost of traveling 1 hour either way was too much to continue with.
We had hoped when we moved to take Moran to the Chiropractor that friends there go to.

Thank you for the suggestion
God Bless

carmel said...

Hie Gae,
St Dymphna is one of my favorite saints. She was an Irish martyr and is the patron of those suffering with nervous and mental afflictions. Praying for you all,
G.B.
Carmel

clanclarke said...

Gae,
I will add Moran to our list for our family prayers each evening and also for your family to be reunited. I know first hand how hard it is to have sick children of any age that Doctors can't find an answer for and also what it's like to be separated from husband/daddy for months on end. I wish we lived closer so I could offer to help our in a more tangible way. I look forward to getting to know you better from afar and hopefully to catch up in person when we are up your way or viceversa. Blessings and prayers to you all, just take one step at a time and "do the next thing" and you will get there. God's ways are never wrong even if we don't understand the path he leads us down sometimes.
Rebekah

Homeschoolmum4Christ said...

Hi Gae,
(((Hugs))) I will pray for Moran and that your home will sell quickly so that you can be together as a family.

You have certainly had a horrific week, so I'll be praying for a better one next week.

God bless you,
Jillian
<><

stef said...

dear gae, prayers for you from across the oceans, esp. for moran!! stef and family in cincinnati, ohio, usa

Angel said...

Definitely praying. My kids always seem to get sick when my husband is out of town, or have emergencies, or other difficulties, and he is usually only gone for a few days or a week at a time. I can't imagine how it would be for months -- years!

A few years ago my 3rd child had a febrile seizure while eating a cookie and nearly choked. (he was 2) My sister has epilepsy. Seizures are terrifying, and having to deal with behavioral issues on top of it... poor little girl; I will certainly pray!

~ Judy ~ said...

Thinking of you and your darling Moran and asking Our Lady to wrap you in the comfort of her heavenly mantle. God bless big brothers who wait up for people!!

Casey said...

Gae-

Marilyn sent me a link to your post and please know I plan on sharing what I know from our eldest son's issues with anxiety as soon as I get a few minutes to type it all up. It really sounds like she had/has some of the same sensory issues our B has had and my sister is epileptic so I also have some knowledge of seizure disorders and the complications that they can cause if no one even knows there is something going on. It's pretty late here and I haven't had much sleep the last few days. I do have your email address via Marilyn and will email you sometime tomorrow. Please know in the meantime I am praying for your daughter, and you and know that God will provide for her whatever the issue she might face.

elm said...

Hoping and praying that your trials will turn to blessings SOON!

Gae said...

Just a quick thank you to you all again.
I feel that we have been so blessed to know others care and pray for us.
We are preparing to go to Mass so not much time.
I REALLY appreciate ALL the prayers
Again Thank you
God Bless

Jessica said...

Oh Gae, I just stop by to say hello and am so sorry to hear this!! We will most definitely be praying for Moran!

Christine said...

Gae, I have been praying for your daughter and you since reading your post a few days ago and will continue to do so.

kimberly said...

Oh, my goodness, Gae!!

I had no idea you were undergoing such suffering...my prayers are with you and I will most especially remember you during Adoration this Thursday.

Is there any chance that Moran could possibly have an Autism spectrum disorder? She sounds so very much like my son Joseph (the one we refer to as Gawain). Joseph suffers from Asperger's...something that the average person would never guess. He's extremely bright...rocket-scientist smart, but has issues with people and interacting socially...these issues have been present since birth. What you've described doesn't really sound like anxiety...I think the doctor's are calling it anxiety because they associate a child's refusal to be examined with fear. It sounds as if your daughter has always reacted this way...

Seizures are not uncommon for children with an Autism Spectrum Disorder...my son has never had one, but that doesn't mean that it can't happen.

I'm certainly no doctor, but just thought I'd mention our experience...

We'll be praying for you...for your many intentions...that God may soon still these doubts and questions...

Something really beautiful is in store for your dear family, in the midst of this suffering...

Carol said...

I just found your blog and came upon this post. I'll be praying for your beautiful family.

dewhurstphillips said...

Dear Gae <3 These posts keep popping up for me - I wonder if it's a coincidence?? You and Moran's journey has come a long way since those awful moments of not knowing - and how interesting that your prayers have not all been answered in the way you wanted at that time. I for one am glad that you didn't end up moving away.

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