Some Challenging Days

All of a sudden we have quite a few appointments and places to be daily again.  Life has been so busy that I fall into bed just exhausted every night.  I fall asleep as soon as my head hits the pillow, only waking to little miss "K"'s squeaky noises, as she stretches and wakes up for her night feeding.  We have a precious hour together every night, just the two of us while she slowly eats, gets burped and falls asleep into dreamy smiles in my arms.  We both go back to bed and sleep for the last few hours of the night.  Things are busy and sometimes very hard but with lots of wonderful things mixed in every day.  God is so good.

When I have to go somewhere now, we have to pack diaper bags and toy bags to keep the toddlers busy as they do not sit still well anywhere yet.  We have to get all the children ready.  If we are going to be gone over a meal time I have to pack me food because of my food sensitivities.  We have to load Antonio in his wheel chair and climb into the van and over seats to buckle three babies in their car seats.  Then every stop we make we have to unload Antonio, set up many strollers and unload three babies from car seats.  If we make just a few stops I am so tired just from the loading and unloading process.  Praise God for all the other children that help me so much in this whole process.  All I can say is that every week I look forward to Sabbath so we can all have a down day and just truly rest at home.  Thank you Lord for a commanded day of rest! 

Some of these appointments have been for William.  I think we are getting closer to figuring out exactly what is going on with Williams health, Praise the Lord.  His health has been declining for the last four years.  He has all the same symptoms as his dad does with Addisons Disease but the test keep coming back that he does not have it.  One test did show that he has a chronic problem with hypoglycemia that we are trying to control with diet but without success.  (Tim had this issue as well before being diagnosed but it got much better on its own once he started his Addison's med.)  I decided to take William to a pharmacy, in another town, that has a pharmacist there that works with people and their diet to control diabetes and other health issues.  They focus on natural if possible for health.  After a long health interview and filling out a lot of questionnaires about his health, the pharmacist said he felt it was his adrenal system as well.  He suggested a 24 hour cortisol test to be done.  It would show what his cortisol levels are at different times through out the day.  We got the results back yesterday and it did indeed show Adrenal fatigue and insufficiency.  I now have an appointment with his pediatrician to discuss the test results.  We also have an appointment with Williams Endocrinologist that has been trying to help us figure this all out for several years.  I pray we can get to the bottom of this and improve Williams quality of life.  As of right now he has so many "crashes" during the day that he has a hard time thinking, his co-ordination is sometimes off and he is exhausted.   The only way for him to feel better is to lay down or sit quietly for a while to get through the day.  Going out into the heat, not eating frequently enough or enough protein, and physical work, all make him "crash".  Before he can move forward in this very exciting time in his life, of spreading his wings a bit, we have to get all these things addressed and figured out for him.  As of now he can not hold a job or further his education until we get to the bottom of it all and find treatment.  I am very excited and feel we are on the brink of being lead to the core issue and treatment for him.  Thank you God.

(Now for some potty talk, sorry.)  A lot of the running to appointments has also been for "T".  He has had diarrhea since he came here way back in February.  When both the boys came they both had it.  I attributed it to the fact that they had an almost total milk diet and that they both had been on heavy IV antibiotics for staff infections when they came.  I have been giving them both probiotics for a long time and have seen little to no improvement in "T".  "B" did get back to normal but about once a week or so gets diarrhea for several days as well.  Not fun for potty training!  Six weeks ago "T" got his age appropriate shots and his bowels have been almost water every since.  We have had to take him in for blood work and do the whole potty sample routine.  He has been tested for a lot of things and one test showed that he does not digest Fructose at all.  So he can no longer have dairy and maybe some fruits.  I see a difference in his appearance and energy level since taking him off dairy.  No more dark circles under his eyes or red rimmed eyes.  Also, he is not waking in the night anymore and fussing for a few moments at a time.  I guess it was stomach aches from dairy.  But it has not cleared up the diarrhea for him.  The HIV test came back negative, glory to God.  We are still waiting on the Celiac Disease test to come back.  If that test is positive he will need to have a Dairy free/gluten free diet.  Not an easy diet to have a toddler on.  We are praying for answers for this little guy as well.  If "T" comes back positive for Celiac we will have "B" tested as well and that might explain his intermittent bowel troubles.

Lastly, we have had several appointments for baby "K".  Over all she is doing very well.  She is growing and at her last appointment was 10 pounds 11 ounces.  When she came she was 7 pounds 3 ounces.  She no longer fits new born clothing and had to move up into the next size diaper.  She is getting stronger and her eyes are focusing much better.  When she came her eyes stayed to the outside almost all the time.  Her eyes basically looked to the outer sides of each eye.  So I don't know if it is just a weak muscle thing or not.  We might end up going to a specialist about it at some point.  But as time is progressing she is bringing them into a normal position more and more.  We are praying about her reflux too.  It takes about an hour to feed her.  She is a very slow drinker and I have to burp her after every ounce or it all comes up.  Even though we take our time and burp thoughally we still end up with it all back up and all over us at least one feeding every day or so.  It scares me every time.  As babies are nose breathers and she spits up with such force it comes out her nose and blocks her airway.  She can not breath and catch her breath.  I have to suction fast.  I am praying she will outgrow this very soon.   Every time this happens I have to take a shower and bathe her.  Then after her tummy settles, re-feed her.  All that aside...she is a very very good baby.  She is happy and smiley.  She is laid back, content and good natured.  I enjoy every moment with her.  Such a sweet little girl.  She brings us all a lot of joy.

May the Lord God in heaven clearly lead us all in the direction He wants us to take in our lives.  May He help us all to have a servants heart in all we do.  Being Christs hands and feet here on earth till His soon return.

Isaiah 41:10  Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.

 

Blessings,

susan