The beginning of a headache

This is Hannah right when a headache began. I know they have to hurt because she never cries like this 😦

Getting a bone marrow biopsy :(

For the last six months Hannah’s white blood cells have been abnormal. Her nuetrophils are always low with this last one being 282! Her platelets go from being too high one draw to to low the next, and her lymphocytes are always really high. The doctors have been doing a wait and see approach and she is constantly sick. This last Sunday we were at her birthday party when all of the sudden she started crying and holding her head. She would barely open her eyes and when i picked her up she was burning up. We went home and gave her tylenol but for the next three days her fever ranged from 101.5 to 104.7 and she would cry so bad constantly holding her head. She has several swollen lymph nodes in her head that have been there for several months without going down.Took her to the ER on monday where they gave her some antibiotics and sent her home. Wednesday we took her in to see the pediatrician because she seemed to be getting worse and they were very concerned. Dr Christy thought she might have had an infection in her brain and told us to go home and pack a bag and then go straight to the hospital where they would do some blood work and probably transfer her to Denver.

     When we got to the hospital they drew blood, used a catheter to get urine, did chest xrays, and a ct of her head. When the results came back they didn’t think she was critical enough to be transfered but said that her platelets were a little low and she was severely neutropenic. The sent the blood out for a perepheral smear and told us that she would probably need a bone marrow biospy to check for blood cancers and other things. 

     Well, we got the results back and it showed that Hannah has Leukopenia with Nuetropenia, low platelets, normochromic microcytic anemia and atypical lympocyes. We are now going back to the children’s hospital in Denver on Tuesday and she will see the hematologist/oncologist on Wednesday morning and then have a bone marrow biopsy and aspiration after that. She will also see her neurologist on Thursday morning to see why she is having all of these headaches. Here is a pic of her when the headaches begin. She looks absolutely miserable. 😦

Our flight was cancelled and we missed Hannah’s appointments

Hannah has a neurology appointment tomorrow morning to check on the hydrocephalus and another one in the afternoon to check on the helmet and see if there has been anymore improvement. We were scheduled to fly out this morning with angel flight and back on Wednesday with footprints in the sky. We found out late last night that her return flight was cancelled so we then had to cancel her flight out this morning. I am so bummed out about it. I really wanted to see if there was an improvement and see how everything looks in her brain. We were also supposed to see my youngest son’s neurologist wednesday morning to talk about a new surgery to correct the epilepsy. I feel horrible not being able to get them there. I know it’s important for her to not go more then a month without having the doctor check and adjust the helmet. I can’t do much on Labor day but tomorrow morning i will call and see if there is a way to get down next week. 

    On a good note, we did a fundraiser for Hannah at Montanna Mikes on Thursday and had a lot better turn out then expected. We only had two days to invite people so we only had 11 people show up but, she made enough off those 11 people to pay for her next trip down. 🙂 We want to thank everyone who came and everyone who has supported Hannah through thoughts, Prayers, well wishes, visits, and donations! You are all very special to us!

A trip to Denver with good news!

We just got back from a two day trip to Denver. Hannah saw the orthopedic doctor Wednesday and the Rheumatologist on Thursday. The plane ride was terrifying but we got great news at both appointments! Hannah’s head has made a 7mm change for the good, so the helmet is working!!! Only a few more months to go! Although i dont know what they will do about keeping her safe from falls. The doctors say that any slight bump to the head can cause another bleed and the helmet prevents so much with her beginning to crawl and pull up on things. I guess we will cross that bridge when we get there.

The Rheumatologist says he thinks the Reynauds is improving and she may outgrow it by adulthood! We will not be putting her on any beta blockers for now and will keep praying that it goes away and she doesnt develop any autoimmune disorders in the mean time. Please continue to keep her in your prayers as she still has a ways to go. We will be going back to Denver in early September to see the neurologist and ortho doc again. God bless!

More bad news for Hannah

Things were starting to look up until recently. Hannah had some more blood work drawn and again her white blood cell count is very high. It has been high every time she has had it drawn. They sent it off to pathology to be examined under the microscope and we should have some more information tomorrow. Hannah also had to have a cath put in to collect some urine without success. They had several doctors try and no one could get one in. They want her to see another specialist because they said her urethra is way to small. She is so scared any time that she sees someone in scrubs or a white coat that she just clings to me and screams the moment she sees them. It breaks my heart to watch my baby girl in so much pain. Please pray for some good news!!

Hannah’s in the epilesy monitoring unit in Denver and has recieved so much support! Thank you!

So Hannah was supposed to be flown down to Denver to be admitted in the children’s hosital for monitoring, by angel flight on Monday morning. Because of the severe weather, the pilot call Saturday night and said he wouldn’t be able to fly but if we wouldnt mind going a day earlier he could come pick us up in the morning and drive us down. Which he did. He is a complete stranger yet he used his own gas and time to drive me and my daughter to another state. He also stopped and bought us lunch along the way! He will be back on Thursday to fly us home. I can’t believe how awesome and generous some people are.

    I am also on a birth board online and have recieved so much support through the women there. Many of them have been praying for and thinking about Hannah and some have even donated money to assist in her medical care. It makes me cry to think about it. I got a message yesterday from a mom on the board named Amber and she asked if her and her little girl, who is Hannah’s age, could come and visit Hannah at the hospital. They got here yesterday afternoon and brought her a cute stuffed frog. She loves it!  Amber’s daughter, Delaney was so sweet to Hannah and even bent down and kissed her after she started to cry. 😦 We will be meeting another mom and her lo tomorrow as we meet up with them again. It’ s so nice to see Hannah making friends! Thank you everyone for all of your support!!!

 

some improvement and another milestone reached!

THey increased Hannah’s Keppra dose on Monday and it seems to be helping. She is still pretty irritable but the   seizures are a lot less frequent. Also her mental status has inproved and there hasn’t been any more increases in head circumference! Dr Hall is no longer concerned about a bleed but does want to admit her on the ninth of July to the Epilepsy monitoring center in Denver for an overnight EKG. Angel flight will be flying us out and back home. I am so thankful there are good people out there that help complete strangers. 

    Oh yes, and Hannah learned to army crawl! She has come so far developmentally the last couple weeks it’s amazing!!! I am so proud of her and you can just see how proud of herself she is. I love her with all my heart!\

A new seizure medication and possible brain bleed…

Hannah’s neurologist is on vacation, so we have been working with one of her coworkers this past week. With Hannah’s increasing seizures, confusion, and irritability, Dr mo thought it would be a good idea to start Hannah on a new seizure medication called Keppra. She started taking it tuesday morning and has actually seemed to improve quite a bit! She hasn’t had nearly as many seizures and while she is still pretty irritable the confusion has seemed a lot better! She has laughed several times today, which is always a blessing to hear! Dr mo told us to expect a call from Dr Hall on monday when she returns from vacation as he is concerned their may be another small bleed in Hannah’s brain. As of now we will be flying to Denver next week where she will be admitted to the children’s hospital for more testing and imaging. Please continue to keep Hannah in your prayers! I would also like to thank everyone for all their prayers, thoughts, and donations through Hannah’s illnesses. We are almost a fourth of the way to having Her helmet payed for!!! 🙂

not a good day…

Hannah has been really out of it the last couple days and has had multiple seizures. Ever since yesterday morning she has either been screaming and holding her head. (you can tell it hurts) or just completely out of it. I took her for a bike ride yesterday and was pushing her along when i looked down and noticed her head was down on the handle bars, arms and legs dangling and not responding when i called her name. I quickly picked her up and she looked at me like she had no clue what was going on. Then she sat up a bit, looked around and cried. I walked around with her for a bit and she started to get back to herself again. We had about five experiences like that yesterday and last night she was just inconsolable untill about 10:00pm. She woke up four times through the night crying and has been crying all morning. Still waiting on the doctor to call me back but i know waiting for her next scheduled appointment is not an option. I want her seen and i want them to help her feel better. She is so little and i hate seeing her in pain/discomfort! My heart is heavy for her right now.

Hannah Laughed!!!

It was the most beautiful sound i’ve ever heard! I have been trying so hard to get her to laugh for the last 6 months and nothing. I would tickle her, make silly faces, play peekaboo, anything i could but she wasn’t amused. She started “fake laughing” a few days ago to try and make me feel better. lol. I was acting so rediculous for about an hour trying to make her laugh and then she did a half smile with the most hilarious fake laugh i’ve ever heard. Then wen’t back to being serious . “ok mom, i laughed now you can stop.” I have kind of let it go for the last few days because the fake laugh was awesome enough but then last night after her bath, her brother kyle was playing with her while i was on the computer and i heard the deepest most beautiful laugh come from her. I was so happy i cried. I was starting to wonder if i would ever hear my baby girl laugh! God is great!