Jacob test result puzzling

Any nurse or hematologist out there... can you please tell me what a low HbA1 means, and a just a little high HbF,...
Jacob result from his Hg Electrophoresis tests are back:HbA1 94.5% (normal is higher then 96.0%) - hence a little low, HbA2 is 3.4% (normal is 2.0 - 3.5%) - hence he is just a the normal top, and HbF is 2.1% (the normal is below 2.0%) - hence he is just a little high. No hemoglobinapathy detected. From what I can figure out with the internet: hbA1 could relate to blood sugar amount - he was hospitalized as a newborn for low blood sugar was on glucose IV drip for 3 days and then came home on day 4. No one ever checked his blood sugar levels since then.HbA2 is a mistery to meHbF is high when your born and decrease as you age, maybe it is high at age 3 3/4.... I would love your input....Dr. Rabie our family physician will get a call from us tomorrow, inbetween getting Daniel's biospy done.
We still have not received Esther's blood work. With al lthe worry,... those little sleeping aid the doctor gave me should come in handy.
The reason we get the result sent to us, is because our doctor has a hard time getting the result s through her fax machine. So if anyone wants to donate an extra telephone line to Dr. Rabie.. go ahead. But I can't complain to much she and her team are great.
They get double thumbs up from me.

CHEO called Daniel's biopsy is tomorrow

HI all, Please pray. CHEO called this morning. They have changed Daniel's bone marrow biopsey date. Dr. Johnston wants it donw tomorrow rather then thursday. The excuse they gave me was that they are overbooked on Thursday, and they want his done sooner then later. All childcare arrangements were made in less then 5 minutes and Joey is hoping to be able to get the day off tomorrow.Please pray for all of this. I am nervous. I was taking real comfort that Daniel's biopsy was going to be on the anniversary of John Paul II's death. But then again maybe he has something to do with them changing the date. The sooner we have answers the better. Miracles are happening! Please pray that we get Esther's iron levels back today. I am so nervous about that. Her hemoglobins are low too, and we need to know if it is due to iron deficiency before we go ahead and put her through all the testing like Daniel had and is having. Please also pray that I relax. My body is aching so much,.. it is really hard to sleep. and went I do it is not very deep. thank you,If you have any prayer needs, please let me know. I would like to offer up the procedure tomorrow for those in need.God bless,Roxanne

Colapssing or not!

With the exception of labour, I don't think my body has been this sore. I feel like my body will snap or collapse. Last night, Joey sent me to bed early. It was wonderful to sleep by myself (without Daniel by my side). Joey ended sleeping in the twins room with them in their crib for a little while, until Daniel started his coughing fits and woke up Esther. That is when we all played musical bed. Jacob had just woken up and managed to snuggle me in my bed. Hence, Joey took Daniel to Jacob's bed and I snuggled Esther in the single bed in her room. I eventually managed to get bak to my bed for a few minutes unitl Daniel woke up yelling for Mama! Then again it was 6:50 am.
It has come to our realization that I must not be getting any REM sleep due to high stress and being Daniel's nurse around the clock. Hence, Joey gave me that brake last night. Daniel had about 4 coughing spells last night which each lasted 30 minutes or so. .... but otherwise seems to be handling everything well.
Any know of any muscle relaxants which still allow you to drive?

Sleep or no sleep

The house is quite,... and I should be sleeping. It seems the pressure to sleep is keeping from sleeping or maybe it is all the chocolate I have been eating. I know it is lent and I should probably not eat sweets but with all the stress going on around here,... a few handfuls of chocolate cannot hurt!!!

We meat with our small community of families tonight. It was great. Our piano was played by a great pianist and guitar strings where plucked and the house was filled with praise and worship to our Lord and King. Stories of how God heals terminal illness where shared and rejoicing took place. The children received prayers and they danced like no one was watching... with the exception of their heavenly Daddy.

At bedtime we had a little incident that is just to funny not to share.
Months ago we decided to switch the twins from formula to cow's milk. We did it gradually. Esther did not mind at all. When we got to about 1/2 formula and 1/2 cow's milk Daniel protested and refused his "baba". We kept it up for about 4 1/2 days until I could nolonger handle this little boy who was misbehaving and tantruming all the time. I gave him a formula bottle and he returned to his joyful self. Since, then he had been having formula and Esther cow's milk. Esther will have formula when we are out and about just because it is easier. We have wonder what Daniel who say to trying cow's milk again... well...
tonight... Daniel asked for his bedtime bottle and we gave it to him... but he took a few sips and rejected it. This happened several times. He kept begging for a bottle, and he was refusing to fall asleep without a bottle. We would give him his bottle and he would reject it and say NO! Joey was trying to rock him to sleep, when it hit me... had we accidently given the formula bottle to Esther and the milk bottle to Daniel.... I made a new formula bottle handed it over to Daniel. He took a few sucks ... and happily sucked all of it back. And was asleep in minutes. Guess we got our answer.

With that I think I will go catch some ZZZZZZZZ

Daniel's second visit to oncology/ hematology clinic

Hi All, Our second day at the clinic went fairly well. Daniel's hemoglobin were at 90! On Wednesday Daniel's hemoglobin were 69; hence he received a blood transfusion, in the in the emergency department on Wednesday night they were 93. The Doctors are not to worried about the drop form 93 to 90. They had told us on Wednesday during the transfusion that they would expect his haemoglobin to be at 90 on Friday. The not so great news is that many of the virus for which Daniel's blood was checked for are showing negative meaning he does not have them. (We are still waiting for one result to come in but it probably will come back negative too.) this is not so good news because if it was a virus causing all of this, the nightmare would be over with at the most in a few weeks. Daniel still had a fever yesterday at the clinic. As this was day 5 of fever he had a chest x-ray (which he hated), and urine sample taken (which he also hated). The chest x-ray was clear and the urine sample will take 24 hours to come back. Daniel still has "spells" of breathing fast but the fever has given us a brake. He cough at night chocking on his saliva.... he has a sore throat... sounds like laryngitis. They considered admitting him yesterday. However, looking at how much Daniel dislike being at the hospital and how he in enjoying coming home and taking into consideration some other factors such as how close we live to the the hospital. We concluded to not have Daniel admitted at this time. If we are worried about his condition we are to take him back to the emergency department and have the telephone number for the on-call hematologist/ oncologist. We will be seen again in the clinic on Thursday, April 2nd. This will be an all day affair. This is the day on which he will have his bone marrow tested for nasty things like leukemia. This morning Daniel enjoyed playing outside and just being a typical 20 month old with giggles and tantrums. Esther seems to be better. The antibiotics seem to be doing their job. She has not yet had another seizure. She just had one on the 10th of March (late at night) and on March 24th (given Daddy an ambulance ride as a birthday present!).Thank you for all your prayers and support. God is totally helping us through these challenging times and making the system work for us.Love,Roxanne

first visit to oncology/ hematology

Hi All, We are heading off to the onocolgy/ hematology clinic this morning for more blood work and hopefully some test results and unlikely but possibly another blood transfusion for Daniel.Many of you have asked how you can help? Meals, or home made goodies are always wlecomed and appreciated as things are pretty busy in the home and we are out at the hospital so much. When we are home the kids just want our attention the sick ones and the "not sick but need mommy too" ones. Visits are appreciated as well as it gets our minds thinking about things other then illness. One way you can help is simply by calling and talking to us.... somethings about what is happening with us as it helps to get it "off out chest"/ "out of our heads" or the best is to hear what is happening with you... or just make us laugh and feel normal that people are calling.... you are not bothering us by calling. We need anything that can resemble a sign of normalcy. other things you can do is prayer, pray , pray...and let us know if you get anything from those prayers. One of the possible things Daniel is facing as a diagnose is called TEC but it is a diagnose of exvlusion... meaning everything else has to be ruled out first.... here is a link to explain what TEC is....and is not....http://www.drgreene.com/21_808.html It is not sure that this is whatwe are dealing with but it is the most probable. Please keep in mind that there is different ways to count hemoglobins some count in with low number ex. 10 and other count them with high number... 100. Daniel visit to emerge on March 25th in the evening demonstrated that his hemoglobins were at 93 after the blood transfusion up from 69 that morning. Hurray.... today they will check to see how much hemoglobins are in the blood again to see where things are at. Daniel's body could be destroying hemoglobins as well as not producing many of them... hence the need for the test. Got to run to CHEO...love lots and thanks for everything...Roxanne"Give blood it saves lives!"

Hi all of your dear friends and family, Thanks you for all your prayers and support through out this day. We arrived at the onocology clinic a little before 9am. Daniel had more blood work done. We waited for some of the blood work to come back and then met the resident doctor. She had a crucifix and a medal of Mother Mary and Baby Jesus on her necklace.... She questioned us on all of Daniel's medical history and his overall health and being. It was very complete. A little while longer and another Docotr came in a great man I forget his name at this time.... but he was amazing. It turns out that Daniel's hemoglobins dropped from 74 yesterday afternoon to 69 this morning. A blood test has discovered that Daniel has very few new Hemoglobins which indicates that his bone marrow is not producing the proper amount of hemoglobins. He talks to us about the various possibilities of this. Including Leukimia. Daniel will be put under sedation for a bone marrow test next Thursday (April 2nd). This will test for nasty things like cancer. The doctors don't think it is leukimia but it could be so they are testing for it. Today, Daniel had many many many blood test done. Complete results form this will take a few weeks. The doctor says that some virus can actually decrease the bone marrow from producing the proper amount of hemoglobins. Daniel was tested for many of these virus today. Some of the virus that can cause this h

Daniel had more blood work done. We waited for some of the blood work to come back and then met the resident doctor. She had a crucifix and a medal of Mother Mary and Baby Jesus on her necklace.... She questioned us on all of Daniel's medical history and his overall health and being. It was very complete. A little while longer and another Docotr came in a great man I forget his name at this time.... but he was amazing. It turns out that Daniel's hemoglobins dropped from 74 yesterday afternoon to 69 this morning. A blood test has discovered that Daniel has very few new Hemoglobins which indicates that his bone marrow is not producing the proper amount of hemoglobins. He talks to us about the various possibilities of this. Including Leukimia. Daniel will be put under sedation for a bone marrow test next Thursday (April 2nd). This will test for nasty things like cancer. The doctors don't think it is leukimia but it could be so they are testing for it. Today, Daniel had many many many blood test done. Complete results form this will take a few weeks. The doctor says that some virus can actually decrease the bone marrow from producing the proper amount of hemoglobins. Daniel was tested for many of these virus today. Some of the virus that can cause this in the bone marrow have no test. Hence it gets disagnosed as TEC which means that Daniel will have to be monitored very closely and might need repeated blood transfusion over the course of several months but then will be fine. Because, Daniel was very lehargic this morning and his hemoglobins were at 69 and probably dropping he received his first blood transfusion. Which means being hooked up to an IV for 3 hours. I have never ever be so grateful that someone actually took the time to give blood. Thank you to all of you who in the past have done this. ... We will be going back to the onocology clinic on Friday morning for a 9:40 am appoitment for more blood work. Meaning to see how his Hemoglobins are in they increase, stayed the same or dropped. Then we will be going on Thursday, April 2nd at 8am for his bone marrow test for which they have to sedate him. Unfortunately, they are not able to do his MRI at the same time. Hence, my little guy will be under sedation in early april and then again in mid June. Please pray for him,... all of this is affecting all of us. Jacob is very stresed out. .. Thank you for your ongoing support.Will keep you posted.... with lots of love,Roxanne