Friday, July 31, 2009
I don't reply this way to make anyone feel uncomfortable, I simply share the truth. I am not ashamed that my son had a stroke, and I have no problem letting people know this can happen. I also don't do this to abruptly end a conversation, although sometimes I think I need to. We live sheltered lives sometimes believing that unfortunate circumstances cannot happen to us. I have been told by doctors that we "drew the short end of the stick" during our pregnancy. Harsh, and true to a point, but Jude is definatley not the short end of the stick. My point is people should be prepared that unfortunate events can take place, and that you need to learn to adapt. Of course, I wish that Jude never encountered his stroke, and that he was taking his first steps. Of course I wish he could roll, hold his head up, and hold objects. Although, he isn't, and I love him just the way he is. I love that I can sit and hold him for hours, and that he will just stare at me, and grin. I love his little pterodactyl squeal that he let's out when he is very happy. I know Jude will most likely live with Mike, and I as long as we can care for him, and that doesn't bother me a bit anymore. Jude is special not because his special needs, but because he is JUDE!
So we saw the pediatric hematologist yesterday, and I really liked her. I was happy that her office was right across the street from my work, because the appointment took over an hour. She was very detailed, and took her time with us. In my opinion you can tell a doctor is quality when they do not rush you out the door, and spend time getting to know your case. She reviewed my plethora of information in Jude's medical binder I keep. She looked over all of my blood work, and all of his. She asked Mike and I a long list of questions. She then said she was unsure if she should test Jude for a bleeding stroke, or an ischemic stroke. Old feelings of panic swept through me thinking she was going to tell me Jude didn't have a stroke, and his issues were my fault for some reason. I knew that wasn't true, but as a mom you cannot help questioning why it's your child that had something happen. She reviewed the in utero MRI findings, and saw the bilateral blood. She said this leads her to believe he had an ischemic stroke. That basically means Jude had clots that broke loose, and she believed they went to his ventricles causing them enlarge. She explained that initially she would lean towards the bleeding stroke since I am a bleeder, but the MRI makes her believe otherwise. So she is going to test him for both potential issues both bleeding, and clotting. We were told his risk of having another stroke was only 2% unless they find something underlying. Then she sat on the table, and in a nice tone she explained, " a lot of time parents come in here, as they should, looking for information on why their child had a stroke. Many times our tests come back 100% clean which is wonderful news, but it means you still don't have an answer as to why this happened". I thanked her for her kind words, and explained that I knew this would probably be the case. So Jude gave several viles of blood yesterday, and he goes back in 3 weeks to give more. In 3 weeks he also had to give blood to check his Depakene levels (his meds) so her office is going to do this instead of the diagnostic center we normally go to. It's all a bit confusing sometimes, but it was nice to have a specialist look at his charts, tests, and give us her opinion.
Wednesday, July 29, 2009
Tonight when I got home from work I was still feeling ill. I had religiously administered the eye drops every four hours as instructed. I began to feel some relief, but not enough to declare myself well. When I got home Jude had only eaten 9 1/2 ounces the entire day, and I came to the conclusion that he wasn't feel well either. I knew I didn't feel like eating, so why should we assume he does? I made him a bottle, then took Jude from his grandmother, and calmly sat down with him on the couch. I put the bottle in his mouth, and at first he refused to suck, simply letting the milk flow in his mouth without response. Suddenly he seemed to realize what was going on, and he latched on to the bottle. He did not stop until the entire 6 ounces were gone, and I even got him to take 2 more ounces. You could tell he was very hungry, but had been hesitant in eating. So is this just a reaction because his mom was home? I don't think so. It's just timing with Jude, and I happened to catch him at the right moment. Later in the evening I got him to take another 8 ounces with rice. After he took his last bottle I watched with desperation as Jude suffered another long seizure. I sighed with exhaust and relinquished my fight for the night. I held Jude close, but understood there was nothing I could do. We simply waited for the seizures reign of terror to end.
So will Jude ever be seizure free? I don't know, but I hope so. Whether through stem cell therapy, surgery, or Gods will, we hope he will indeed find a way to be seizure free. Throughout our journey of the special needs world we have always hoped for some normalcy. When we begin to achieve that feeling we are always shot down by seizures. I have claimed before that seizures wear demons horns, and I still believe that to be true. They seem to find a way to morph into a different being, and escape the hold of the medications.
So we confirmed that Scottish Rite would also like to receive Emily's Smile Boxes, and we need your help. We are about $100 away from her goal to be able to now fill 175 boxes for Christmas. Please visit http://www.emilyssmileboxes.com/. If you know anyone that can donate even $5, it will help us.
I am off to take a bath, and wash my itchy eyes. I plan on patting Jude, thinking of Em, and hugging my husband good night. I will dream of seizure free days, relaxful evenings, and the Dallas Cowboys winning the super bowl! NIGHT!
Last night was a terrible experience with Jude. I didn't feel well so I went and laid down early, and took Jude with me. I knew he needed to eat so I asked Mike to make sure he got his last bottle, and medications if I fell asleep. I began to drift off when I heard the terrorists (aka Mikes bad dogs) begin to bark, and this woke me up. At that time Mike began to get Jude's medications and formula ready, and decided to feed him in our room. Jude was refusing his bottle, and was getting very upset. When Jude doesn't want to eat, he also doesn't want anything in his mouth, including medications. Jude began throwing a terrible fit, and choking on his medication as they went down his throat. We have no choice but to administer the meds so Mike had to keep struggling with Jude. The more Jude screamed the more upset Mike got. Finally, Jude got to the point that he was so upset that I knew he was going to throw up. I began to hear Jude gagging, and then as predicted he lost everything. Poor Mike had to change his shirt, and I sat trying to calm the baby down. He was doing the breathless cry, hiccups, and gasps that you have after a very good fit. Once I got him calmed down I gave him a bit of Tylenol which he didn't mind, and then snuck in the rest of the Depakene. Let me tell you his feelings were HURT! Mom is who he runs to when he is upset, and the fact I gave him his seizure medications really upset him. He cried for at least ten minutes with intermittent screams mixed in. Mike, and I both felt terrible, and it's heart wrenching to hear Jude cry so much. He is normally a happy quiet baby, so when he puckers out his bottom lip, and wails it's very sad.
As of this morning at 10am, Jude has only taken an ounce, so he is very behind in eating. It seems we have great days where he eats normal, and then down days where he eats terrible. I am encouraged to hear from other mothers of stroke victims that this is rather normal. In fact, Katy told me she had issues with her son eating, but now he eats solids. I am crossing my fingers Jude makes progress in this area. I am also about to defy doctors orders, and try a tiny bit of pediasure with the medication. I am thinking that the vanilla taste may spark Jude's interest. We are a month from his first birthday so this should be acceptable.
I felt bad leaving him today, and Mike's frustration level did rise again when trying to feed Jude. He has called his mom over who has the patience of Mother Theresa, so I know Jude and Mike will both be okay. I am hoping I can make it through the day today because I need the hours at work. My bed, my pillow, and my tv sound really nice though.
Tuesday, July 28, 2009
Yep that's my foot covered in an oily nasty mess from my graceful fall in the parking lot. Luckily Jude was in his carrier, and I even saved the milk. My toes are a little bruised, and so is my pride. Jude got a little thump from his car seat, but he didn't seem to mind. So thankfully everyone was okay.
So I am a bit tired lately, and a little stressed. Between work, Em's smile boxes, showers, and birthdays I need a bubble bath. I take a lot of this on myself so I have no one to blame but me, and I enjoy being busy. Although, if you are a friend that calls me, forgive me if I sound out of it, or distracted. Just remember I still love you, and bear with me. I had to deal with MDCP again this morning, employer Id Numbers, etc...so I am rather frazzled today.
I talked with my family in Missouri yesterday, and they are talking about taking a trip to TX for Jude's birthday. This is very kind of them, and I am very happy they have thought about doing this. I am making Jude's birthday rather laid back, and a come and go basis. I have had friends volunteer to bring some food, which is so wonderful, and well help a lot.
I did get to go see little Jude today on lunch. Mike has a paint job he is working on so he dropped Jude at his moms house. I went over there and got a bunch of kisses, and a few smiles from him. It was a great visit, and I was so happy to see him in the middle of a work day. Thursday, we go see the pediatric hematologist who is a childhood stroke specialist. I am very interested in seeing what she has to say about Jude. I have gathered all my blood tests, and Jude's to take to her. Jude will also go back to get his eyes checked on Friday, and will also be fitted for her adaptive stroller Friday. He has a very busy week ahead of him.
Monday, July 27, 2009
First let me say how proud I am of Emily. I had mentioned she did a fabulous job at the hospital, and when we saw the interview on the news I got chills. If you didn't get a chance to see her, here is the link to channel 8 http://www.wfaa.com/video/wfaageneral-index.html?nvid=383622&shu=1. Emily was so touched by seeing children walk around with her boxes, and I think it really hit home. She knew she wanted to give these items, but I don't believe it's ever been a reality for her. She watched the girl with the IV walking with her box, and her sister next to her clasping one as well. I could see the impact it had on Em, and I know she will work very diligent at getting more boxes to more hospitals. Soon we are going to try to learn how to market large chain stores.
Now to Jude's accomplishments. I had a great time with my little boy this weekend because he was full of smiles, and giggles. He also seemed to be more attentive this weekend than I have ever seen him. Although, I am afraid that he did have three long, but quiet seizures. While sitting on the couch with him on Friday night I talked to him, and smiled. I then put my hand on his chest, and said "Jude, put your hand in mommy's hand". To my surprise I saw his eyes dart downward towards his hand, and this caught me off guard. At first I thought it had to be a coincidence, but I repeated "Jude, put your hand in mommy's hand". I again saw him turn his eyes toward his left hand, and he began to try to raise it. I held my breath, and watched Jude try to work his arm. The scene was similar to a stroke victim's movements you have seen in a movie. As I repeated myself he began circling his arm, and you could see him truly concentrating, until finally.............his little hand landed in my hand, and his face LIT UP. He knew he had done well, and a huge smile spread across his face. He didn't just do this once, no little Jude did this THREE times before it became to much for him. He repeated actions like this throughout the weekend. I would ask to see his tongue, and he would slightly open his mouth. I would ask him where his foot was, and he would look down towards his feet. I also put his pacifier in Jude's hand, and asked him to hold it. For the first time, he clasped his fingers around his pacifier, and held on to it. Although, it's not funny that Jude cannot get the paci in his mouth, it still made us smile watching him try to get his hand to his mouth. He never accomplished that task, but he tried. He would watch his pacifier in his hand, and turn his head towards his hand, opening his mouth. It's these little movements, that restore our hope. Then last night I put Jude into his high chair to include him at the dinner table, and I opened a jar of sweet potatoes. I would say "bite Jude bite", and he would slightly open his mouth, taking in the baby food. I was so impressed with him, and I can only hope these trends continue! He is such a little inspiration to me.
Emily has gone to her dads for a week, and we miss her already. Mike said he isn't sure what he is going to do without her for the week.
A smiley Jude:
Emily and Michelle from Children's, She is giving Emily a tour of the hospital.
Emily and her interview
My two boys
Saturday, July 25, 2009
She is such a joy! Em also got a tour of the hospital, and she loved the trains in the front. I have pictures to share, and more. I am afraid I have to make this very brief. I will provide a large post on Monday explaining Jude's accomplishment, and pictures from Emily's drop off.
Friday, July 24, 2009
Next week Jude will be fitted for his adaptive stroller which is, well his wheelchair. I sat around my house last night looking at doorways, floors, and more. I am thankful we have tile, but I still need to change out the carpet in the living room to make things easier with the stroller, and future adaptive aids. I also understand that Jude's stroller will not go up our stairs. So I began to wonder about eventual conversions of rooms, doors, floors, and more. I wondered if during Jude's life we will need to make these changes, only time will tell. Then I began to feel sorry for us, and Jude.......bad mama! In the next instant I heard Jude's shrill laugh, and I smiled, and the pity party quickly drifted away. This morning I got in my car, and turned on the radio only to hear a sad story coming through the speakers. I listened with interest as I heard a dad talking about his daughter who has terminal cancer. He talked about how the whole town is getting together to create Christmas in July, and fulfill her dying wishes. I swallowed hard, and I thought about how lucky I am. I thought how I can have a pity party that my child is special needs, but I still have my child. We just never know .... do we? They didn't know.....the had a perfectly healthy child until this last December. I know Jude will always need my help, my home, and more. Although there are children out there all over that have predestined plans by the parents regarding college, and more.......but they won't ever see those plans. For one reason or another fate intervenes and derails our life. I guess it's what you do with that life no matter how long or short it is that matters. We can plan, but sometimes life makes our plans for us, without bothering to ask us if it's ok. So we need to live our lives to the fullest possibility, just in case.
We never stop to think much about wheelchairs, cancer, losing a baby, losing a child, or even stemcells, or health care reform......until we have to. Why? Is it because we canot relate? I had no personal vested interest in George Bush holding back stem cell research....until now. I never knew the personal heartache of possibly losing a child.....until now. So maybe we should all take a minute to not feel sorry for people in these situations, but to try to relate to them. To understand what they need, and help them obtain it. To take an interest in politics that will help those that are ill. To stand up and make a difference in someones life.......to make a difference in the world. It may be something as simple as.........Emily's Smile boxes, but it's something.
Have a good day!
Thursday, July 23, 2009
Jude is doing well today, he has eaten on time, and Mike said he is very smiley, and playful today. I get so down that I cannot see him today. Last night I found myself growing very angry at Mike that he is in my position at home and I am working. I knew that was wrong because I have an incredible job, and he is an incredible dad. I have since worked on getting my feelings in check. As stated I hear the first year after your child is diagnosed with irreversible brain damage is a roller coaster of ups and downs.
I will say Mike is cracking me up today because he is at home cleaning out our fridge. Emily and I have a bit of an obsession with pickles......all kinds of pickles. So I received a text (that has been edited) "How many pickles are in the fridge? I feel like the count on sesame street.......eight eight jars of pickles" Then he called me a pickle freak.
Saturday Emily will be dropping off 42 boxes to Children's hospital in Dallas. We will then begin getting all her Christmas boxes together. If you would like to help fill them please consider donating. You can see her site at www.emilyssmileboxes.com.
Wednesday, July 22, 2009
The people that own the place are so nice, and welcomed Jude back with open arms. I (of course) immediately shared with the class when we were introduced that Jude suffered a stroke. This #1 allows people to understand what is going on with him, and why he cannot hold his head up. #2 always provides an opening for someone to ask "babies can have strokes" (which I heard), and therefore I can educate on pediatric stroke awareness. Overall, I am happy we took Jude, and I pray that he will someday be able to use more of their equipment. Time will tell what Jude will accomplish.
Yes, Jude is in his Dallas Cowboys outfit, because again I reiterate that Football season is around the corner. Now if I can only convince Jerry Jones this broke girl needs some tickets to just ONE game...(giggle)
Although, I think a little mohawk would be cute on him, the boy needs a hair cut. I sent the picture to my husband who is adamant I am not cutting Jude's hair, and I did not receive a response.
So one of my best friends, and co-workers is pregnant. I have talked about her before, and how excited she is about her baby. Today she had her gender sonogram, and I found myself on pins and needles. Last night I literally sat in my bed praying that everything was ok. I didn't expect to get so nervous, about her sonogram, but I guess all the old feelings rushed back. I remember being like her, looking at names, and being so excited about my level 2 sonogram. Mike, and I went in with great expectations, only to be told something was wrong. No mother should go in to find out if she is having a girl or boy, and come out knowing something is wrong with the child they are carrying. So she texted me that she knew what they were having, but she won't tell me, and that she was waiting on the doctor to come in. Over an hour later I had not heard back from her, and I literally got very very nervous. I knew in my heart everything was fine, so I guess this was a reaction to my own prior emotions. Luckily, all was well, but the woman still won't tell me what she is having. I am just so thankful her baby looks happy and healthy!! Now I just need to know what she is having so I can buy her outfits.
So reflectively I looked back on a perfect sonogram picture I had prior to our gender sonogram, and before we knew anything was wrong. Little Jude on his tummy made me smile.
It's hard to describe to anyone the feelings of being told something is wrong with your baby. It's overwhelming. It's lasting. It's haunting.
Today Jude is trying out Gymboree again. I will take a lot of pictures, and we will see how he reacts with the other babies. I reminded Mike that he cannot look around envious of the other children that are "normal", but to look at Jude and what he is accomplishing.
Tuesday, July 21, 2009
Jude had a rather long seizure last night while we were visiting my dad and Kay. Kay said a nice prayer for Jude while he was going through the motions. Jude has a few spasms throughout the day, but he rarely has a long drawn out seizure like he used to. This one lasted about 15 minutes, and even though he did not yelp I could hear his breath become forceful with each crunch of his body. Jude's next neurologist appointment is in August so at that time we will discuss further medication options. I know it sounds like Jude's medication is always changing, but thus is the roller coaster we ride. I informed Kay, and Mike both about the bone marrow stem cell study I mentioned yesterday. Kay said she believes if any stem cell would show promise in neurological issues she would think it would be from Jude's own bone marrow. It's all scary, but fascinating. IF there was a possibility that the stem cells could help with his seizures, then that would be wonderful, but who knows.
So I mentioned I would share Jude's first bday party invites. I generally order invitations early because if people's schedules are as busy as mine, I figure they need plenty of advance notice. In addition I have several showers, a wedding, Jude's bday, and Ems bday coming up...whew. So here are his invites, hope you like them.
I would also like to share some pictures of Jude in therapy the last few days. It seems he is still making progress with his head control. His lovely therapist Leah brought Jude a brand new shiny bouncey ball to balance on. He loves his new ball!
Jude is going to try out Gymboree music and play again tomorrow. I will be sure to let everyone know how he responds. I am going to meet Mike, and Jude at lunch time so I can participate with them.
One last thing I would like to share. Emily completed an interview with "Kids who inspire", and I would like to share it with you. http://www.kidswhoinspire.com/emilys-smile-boxes-interview
I hope you enjoy it, I did!
Also, I received my blood results from the hematologist that completed all the testing months ago. If you remember I was informed I had some sort of platelet disorder, but there has been no further testing since. I knew I would need my tests for the pediatric hematologist we are seeing for Jude, since she does in utero stroke research. When I received the paperwork I scanned through the results. Under my bleeding time it's marked not as high, not as an issue, but critical?!? That word seems a bit concerning, you would think they could use something less....dramatic. Anyway, I am trying to find out who I see to narrow down what the issue may be. I love my hematologist though, so I am confident I will find the right person to isolate what the problem is.
Monday, July 20, 2009
I also received an email from senior research nurse with a university. She stated they will be conducting clinical trials in 2010 using bone marrow stem cells for treating brain injuries, CP, and hypoxic ischemic events. She wanted to keep Jude's information on file, and I find this very encouraging. I am apprehensive about extracting Jude's bone marrow, so that would be something I have to really think about. It was nice to have someone contact us, about future possibilities though. I will be interesting in hearing all the pros and possible cons to the procedures.
I also received all of Jude's medical records from his neurologist. It's the first time I have read in bold dark writing "Intrauterine stroke noted". I guess I always think maybe there was something I just did wrong, but there it was in black and white. it was also referred to as a prenatal cerebrovascular incident. What was strange was I received the above mentioned email from the nurse, and I remembered I read hypoxic ischemic event in Jude's medical report somewhere. I believe that is a overall lack of oxygen to the brain, which Jude's stroke caused. It's a little confusing, and I will have to read back over his records, but I am sure it said that somewhere. Anyway, the medical records are just opinions, but they are interesting. Plus, I find this doctor's information a lot more positive than the last dr we had.
I am off, I will hopefully have a chance to update more tomorrow with pictures.
Sunday, July 19, 2009
Sometimes when I read the blogs of other special needs mom I feel like I am lacking the therapy dept for Jude. I see such neat adaptions, and equipment they have for their children. I am not sure if it's a failure to research on my part, or a failure on one of our therapists part. Although our wonderful therapist Leah is meeting with the medical equipment specialist at the end of July to fit Jude for his adaptive stroller. At that time he will also have a bath chair ordered, and I hope he can obtain a tomato chair. I sometimes read these other sites wondering how long it took for their children to obtain neck control, Jude shows so much promise, except for his neck. I know Jocalyn will smack my hand for reading other blogs, and being emotional.......smile. We work with Jude constantly on keeping his head up, tummy time, reaching, and more. I feel a bit held back because he doesn't have the necessary equipment yet, but he is still little. One thing I am pushing with Mike is to take Jude back to Gymboree. We got side tracked from his music/movement class because of his hospital stay, and just never took him back. I am hoping the owners will understand, and not have us pay another enrollment fee. Just loved his Gymboree class, and now that he is more aware I think he would truly enjoy it.
So I know my brain is going a million directions lately, but I guess that's going to happen. So let's lighten the mood, and I will tell you about Jude's crazy hair. Mike and I agreed not to cut his hair until Jude was 1 year, but come on folks it's getting out of control. So I gathered his hair into a nice purple pony tail holder on the top of his head, and took him to Mike to make a point. The pony was swiftly removed, and I was quickly reprimanded. Next time, I think I will try pig tails.
Mike is currently working with Jude on keeping his head up, and opening his hands. I am going to go help him.
Saturday, July 18, 2009
The ever looming issue of keeping Jude nourished is becoming a huge monster waiting for us. It's like we climb the mountain ahead of us only to find a huge obstacle standing in our way, it's a slap in the face. Jude has had a swallow test, and we know that he is not aspirating, so this is just a flat out refusal to eat. I have issues with a G tube, but if need be we would obtain one, but I hope we don't have to travel down that road. I admire you mothers that have ventured in that direction, but at the same time I selfishly hope I don't have to check into that lesson. I hope that doesn't offend you.
As mentioned my friend Fleck was over tonight watching TV, drinking wine, and talking with me. It's amazing how fate steers the appropriate people your direction in time of need. She sat with me on a Saturday night watching my baby cry, and she ate my chicken casserole.... that I probably baked to long. I explained to her tonight that I tend to be rather trusting, and naive when it comes to friendship. Yet in her case I know she is genuine, and she listens to my issues with an open heart. I told her all about my friend Ginger, my oldest... and dearest friend, who has always done the same. I explained that if I was wandering alone in the middle of the night crying Ginger would take me in and wipe my tears, without question. I know Fleck would do the same with hugs and little questions. My cousin would also do the take me in, and if the situation needed, find the person who created the tears and SMACK them with a sock of quarters. It's nice to have people who can listen without "advice", and just let you be. Just let me be..........me. Regardless of a mention of names my friends are always there for me, and I am grateful. When I leave this Earth I hope to leave behind smiles in people's faces. In other words, I hope my friends will think of something I have done, or said with them...............and smile knowing, "Well that's just Jenn". That would make me happy!
Sometimes I do need to just "be" without agenda, or reason. My life may seem together, but at times it is very frayed. The first year is the hardest.........so I hear............I hope they are right.
The stem cell subject has now shown up in several support groups I am a part of. It seems there are several other mothers that either banked their cord blood, or did not. There is even one mother who has had another child already, and banked their blood with the hopes Duke U, or someone else will be performing sibling to sibling infusions. According to Duke U they will be approaching this subject or donation cords in the future. My understanding is whoever performs the infusion must extract the stem cell out of the cord blood to make sure there is no reaction. Although, I am not a medical professional, and only relaying what I have read. Regardless, it's all very fascinating. Ellen announced that Max will be receiving his infusion in August, and I will be following his blog closely.....I always do anyway though.
I am off to make a pot roast, and invite my family over tonight. I made some invitations for my sister wedding, and everyone needs to look at them prior to ordering.
Friday, July 17, 2009
I understand the pediatrician is unsure how the seizure medication works, but I do trust his judgement. We will be keeping a close watch on Jude, and if anything changes I will not hesitate to take him in. The great news is that Mike brought Jude by my office after the doctor. Jude was sleeping, but I was able to wake him up, and get him to take 4 ounces. That means since 8am he has had 9.5 ounces, but it's something!!!
Thanks for your continued thoughts. I will update this weekend. Now I just remembered that the adaptive stroller guy still hasn't called me back, so I am off to call him again
Emily used to run very high fevers when she was a toddler. In the morning she was fine, and by lunch time she would have 103 fever with an eardrum about to rupture. I would never have any warning she had an ear infection it just seemed to be instant. Em's pediatrician was never really worried about fevers, even when hers got to 105 one day. The high fevers made me uncomfortable, but again I learned they were there for a reason. With Jude it's like relearning life, and that sometimes throws you for a loop. Ear infections were Em's only issue, and they caused 7 ruptures ear drums, and 30 percent hearing loss in her right ear, prior to tubes in her ears. It was a nightmare, but nothing compared to Jude.
So I would prefer to be at home with Jude, but I need to work today. I set a doctor appointment for them at 2:15, and I will be waiting to hear. I also sent an email to his neurologist letting him know we were going to the pediatrician. I was unsure if he wanted Jude's pedi to check his blood for his Depakene levels, or not. I figured it's better to cover all the bases. I am still hoping it's just his teeth.
*** Update ~ Since 8am, Jude has only taken an ounce and a half. I am beginning to feel we will be spending another weekend at the hospital. I am frustrated that I am away from Jude, I feel like he needs me.
Thursday, July 16, 2009
After Jude ate, and had snuggle time he was ready to play. I put him in his crib while Mike and I watched a movie, and I kept hearing his famed barnyard toy go off. After I would hear, moo moo, peep peep, I would hear a shrill laugh, and then the toy would start over again. That crib toy was the smartest thing I ever bought. I would like to confess that the rest of the night went wonderfully well, but little Jude decided to play night owl again. About 11:30 I called for Mike, and he came to entertain Jude for a bit while I slept. They finally came in about 1:30, and Jude was still asleep when I left for work this morning. I know it's so stressful for Mike at times because Jude's situation is not normal. Would I prefer to be at home? of course. Am I thankful for my job? 100%, but I still miss my children. I also know Mike needs a break sometimes.
So while upset last night Mike said he thinks the stem cell possibility is chasing a unicorn. I don't really think he feels that way, and with investigation I think he will find what promise it has. I believe he feels he is betraying Jude if he researches the information like he wouldn't be accepting Jude how he is. It's a matter of accepting Jude, but seeing what may benefit him to help him have a better life. We do that with all our children........don't we? I did talk to a company yesterday that is extracting stem cells from full term cord blood. Since the cells are actually extracted from the blood and then infused there is no reaction. This plan is ran by three doctors, and they are going to evaluate Jude's medical records, and give me their honest opinion. They are looking at everything for free, which I thought was very thoughtful. I did some research on one of the doctors, and found a multitude of write ups on him, and videos. The cases and success stories are amazing, one of the cases was a blind CP patient who could not speak, can now speak, and see. I understand though that for every success story there is probably a failure. Regardless, it's fascinating. If Jude is ever a candidate I am not sure how we would afford the infusion. I guess we could hold a large fundraiser like some other families do. Can you imagine how great Jude's case would be for research?? I mean I have tracked everything from the very beginning, and to then follow a possible stem cell infusion, and whether it shows some form of success, or not it would be interesting. In my eyes Jude has already helped other moms, children, and families, and maybe this information would be helpful too? To help data on whether stem cells can help with those neurologically affected, or whether they cannot.
So Em is still practicing her softball, and we let her batting coach know she didn't make the other team. He seemed very frustrated that the coaches did not complete a practice swing prior to starting the batting. He then explained to Emily that any time she tries out it is reasonable to ask for a practice swing, and then advise the coach if the machine is pitching the balls to high or low. He explained that "there is no coach that would want you to swing at a poorly thrown ball, so why would you in try outs?". I explained that the primary reason she didn't make it according to the coach was her fielding, and grounding. He then told her she has to reach, dive, and get under the balls. I explained we were thinking about bumping her up and putting her in 12u rec, but he didn't seem that happy about that. I think he wants her on a team to improve, but that's easier said than done.
Here is a picture of Jude from last night, I love his cheeks!
Wednesday, July 15, 2009
After that call I felt a little down because I understood why they cannot use donated blood. In addition Mike and Emily had been hit from behind, but were luckily ok. So it was a crazy day, and I was anxious to get home. Once I was resting on the couch with Jude I kept looking at his little smile, and I would smile back. I thought about how I love him just the way he is so if I cannot get stem cells for him then... I just cannot, and it will alright. Although, if there is a chance that I might have the remote possibility of improving his quality of life, I would. So I played with Jude for awhile, cooked Em some dinner, and just hung out with my family. It was needed after my whirlwind of a day. I am afraid I woke up about 2:50am due to Emily's meowing cat, and could not go back to sleep. I am not sure if it was the stress of the day, or having to much on my mind for other reasons.
Once I got into work today it was strange, there sitting in my inbox was a request on twitter from a stem cell institute. Not only was it an institute they focus on placenta stem cells harvested from full term baby placenta that is donated. I almost didn't click on the link thinking that I would find the same old information, and feel worthless again. Something drove me to click on it though and I read through the plethora of information. I have always known that the placenta is full of amazing items thus why other countries have different traditions with it. Although you know what stuck out the most, "The placenta stem cells do not posses antigenic properties making the rejection of the stem cells IMPOSSIBLE". Oh my word! I read the diseases and afflictions the cells have been known to help, and cerebral palsy, and stroke were both in there. Who knows if this would help Jude, but I filled out the evaluation form. I have no idea how we would come up with the funds if they chose us, but I trust God will provide. I am sure it's very expensive. Oh, and the funniest comment today was from myself asking my co-worker/best friend Sarah if I could have her placenta after she gave birth in December.
On a happy note, and rather ironic activity Emily opened a fortune cookie last night and it said "A smile will be your passport to the heart of others". How true: www.emilyssmileboxes.com.
Here is a picture Em took of Mike, and Jude on the couch.
Tuesday, July 14, 2009
Back in April of 2008 when I heard the dreaded words "mild Ventriculomegaly" I went on the hunt for a support group. I found the following website, http://www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly&page=1, and met many amazing women. One of those women was my friend Amy (aka. Turtlemom) that frequents Jude's blog. She had a beautiful daughter Parker, and she about the same age as Jude is. Once Amy's daughter was diagnosed in utero with hydrocephalus she researched banking her daughters cord blood. Jude did not present with hydrocephalus, but rather what looked like a lack of brain (cortical thinning). I never ran across information on stem cells helping Jude in anyway. Amy, and I have kept up with each other because our children's situations are similar. Although, I must admit she has kept up with Jude's blog more than I have with Parker, and I am ashamed of that. I am now 100% to date with Parker's story. You see Parker also has bilateral schizencephaly, she has 2 cysts in her brain, and she had severe visual loss. Now? After the stem cell infusion.......... she is crawling, sitting, babbling, and she has her vision. That folks is amazing, and I am thrilled for her family. So sweet Amy emailed me asking if I had considered the stem cell option for Jude. I did consider this, and I asked prior to Jude being born if I should bank his cord blood. The doctor said we could in case of illness, but that it would be of little help to his brain damage (little did he know). I still wanted to bank his blood, but honestly with everything going on I did not. It was very expensive, and I think I was just overwhelmed. Parker's infusion was done fairly quickly after birth, so I am unsure if this has a lasting impact vs stem cell infusion later in life. That is a question I need to pursue.
So I called Duke university this morning, and talked with them about the program they are running. It seems Jude most likely would have qualified IF his cord blood had been banked. They would have used his cord blood to do a stem cell infusion. I then asked them if we can get donated stem cells, and they said no. My next question, was sibling stem cells, but she explained that at this time they cannot use sibling donations. I then asked her if she knew of another research program in the US, or beyond that would accept donated cord blood, but she didn't. My heart sank.
So what benefit are stem cells? Well Amy sent me this article about stroke recovery, and it's rather fascinating http://neurosurgery.stanford.edu/about/stemcellsfillgap.html. I plan on contacting the doctor to see if he has any suggestions. My understanding is that the stem cells can actually improve recovery. They are special cells that can become other types of cells, and work as building blocks within the body. There is no guarantee, but if your child had brain damage and even had a remote possibility of being able to walk, talk, or sit because of a low risk procedure, I am sure you would do it.
So would I have another child if they could use that child's cord blood? YES, it's a no brainer. Have I been scolded that I don't have the finances for this, yes. Although when it comes down to your child, and possibility improving or saving their life ........ well what's the question....you would do it. We would hope that we would have a healthy normal child, and be able to help Jude at the same time. Could I give Mike a normal baby? I would hope so, but the pregnancy would be FULL of stress and questions, although the child would be very loved. In the end there is no question, if there was a possibility this would help Jude, we would MAKE IT WORK. Second jobs, whatever it took......we would make it work. The possibility of this happening is very remote people, so I don't need opinions on it. My maternal side of my family has wanted me to have another child for a long time, but honestly I didn't want to. Would I have an issue with having another child? yes, and no. I have gotten myself in the mind set that this will not happen for various reasons, and I am very comfortable with that. So either way we would do what we needed to. I would stress about finances, because we owe so much in medical bills right now. Although, we are in a different situation now because Jude is receiving help through MDCP. Anyway, like I said......remote possibility, and as of right now no possibility if there are no programs out there. So let me stress as of right now this will never happen, it's just me working thoughts out in my head. I guess it's me dreaming of helping Jude.
I am very uneducated when it comes to stem cells, and maybe someone reading this would have more insight. I do know that in certain situations stem cells cannot be used. Anyone having a chromosomal deficiency cannot use their banked cord blood because the blood carries the same error the DNA has. Also in some situations when a child is sick, it will infuse more of the problem back into the child. Although Jude's issues are not chromosomal or illness, it's all due to the stroke. It's all very fascinating though, and amazing that the medical field can provide this treatment to others. Yesterday I learned that Max http://lovethatmax.blogspot.com/ will also be receiving stem cell therapy, and I am crossing my fingers for Ellen. Regardless, of what may happen to Jude in the future I think the possibility of these children having a chance at even partial recovery is WONDERFUL. There are no guarantees, but I will continue to hope for the best for them.
In the end I will pray, and hope that somewhere down the line Jude can benefit from this amazing procedure. I will continue to research, and follow programs that offer this. I will also not accept the immediate advice of some doctors that may not know the full benefits of stem cells. Jude may never profit from this new research, but we can still keep up with it, and see what advances are made. I can also kick my own butt for not following my own mothers intuition, and finding a way to bank the cord blood. That very well may be something I regret for the rest of my life.
To see the progress little Parker has made please visit her video here: http://www.youtube.com/watch?v=2P8LTCQkaGI. Her mom said she still has her coned shaped head, but she looks just beautiful to me!
Now there is my long rant for the day, and the emotions circling inside of me are many and overwhelming today. I have regret, a little hope, and just pure fasicination. Since Jude was diagnosed my life is no longer simple decisions. My life seems to be full of situations that wreak havoc on my brain at times. I am not just talking about the cord blood, because the possibility it may have worked could be zero. I guess it's just life in general. Sometimes it just isn't easy, but sometimes it's great. It's just the never ending tug of war between the two sides.
Monday, July 13, 2009
Jude's high pitched pterodactyl squeal cracks me up every time he belts it out. Sometimes I watch him laughing along with him, but I wonder inside about when he is older. I wonder if people around us will still look at him with love, or will his disabilities cause people to shy away. I am not sure Jude's drooling will go away when his teething stops, and it's always that unknown factor of what lies ahead. I guess I will have faith that people in general have a good nature about them.
Emily's dad had her this weekend, so it was great to see her last night when we picked her up. While she was out I put her boxes together for her next smile box drop off. That way she can fill them all this week, and get them ready. She was grateful for the extra help, and she even came home to a donation from our friend Fleck. She brought over to huge tubs full of beanie babies to put in the boxes. I am sure Em is at home getting all the boxes together because she plans on dropping them off to Children's in Dallas on 7/25.
So I am still in pursuit of Jude's adaptive equipment. It's my understanding that the person who will be fitting Jude did get in touch with Jude's therapist, but I have not heard from him. I just placed another call to follow up, so hopefully I will hear back from him quickly. That means Jude will be fitted for his adaptive stroller......which is basically a wheel chair, for right now. It will keep his head supported, but I hope someday he won't need this. He will also get a bath chair, and I am hoping a tomato seat, or chair of some sort. I am hoping that at some point I can get the carpet out of our living room, which will be easier for the stroller. Anyway, Jude ate very well this weekend which is so great. He is still working on eating solids, but he is now taking plenty of formula loaded with rice. He is growing, and I can tell he is looking more plump. Take a look:
I am a bundle of nerves today about finances, and medical bills. I hate this part, but I am thankful for my family, my job, and our friends. I am also very grateful for a wonderful weekend, and the chance to re-coop a little. Now I am off to read some other blogs while I am still on lunch.
Saturday, July 11, 2009
Our little baby was as precious as ever today, and was very calm at the shower. We are so lucky that he is such an easy baby to care for. In our situation we are blessed that he does not need more medical intervention, and we understand this. He just seemed to wake up in a great mood today, and smiled, and talked to me most of the morning. Mike said it seems like Jude is a different baby when I am at home on the weekend, and like he knows I am here. That made me smile because sometimes I feel like a lacking mother since I work full time. It's the never ending struggle of wanting to be with your child, needing to work, and a lack of winning the lottery (smiles).
I just sat Jude down for a bit so I could type out this update. He has had a few spasms today, but overall seems to be doing alright. I know his teeth are hurting and I am sure that's causing the additional spasms. Jude was playing with me again while I held him on the couch prior to putting him down. He would lift his hand over and over to my mouth so I would kiss it. Our high pitched kissing noises bring huge smiles, and laughs from Jude, and these moments make our day.
I just made some homemade banana nut bread, and I made some brownies. We are going to my cousins to watch our men yell at the TV while watching the UFC 100 fight. Please have a safe weekend, and hug your children.
Friday, July 10, 2009
I am afraid if we put her back into rec, then Emily just will not improve as a player, and she won't ever make it to select. It's important to me because it's important to her. Select is a whole new world, and if you don't have a team that is picking you up to start with then it's a menagerie of excellent players. It isn't children that miss the ball sometimes, or miss a swing it's EVERY ball is caught, EVERY ball is hit, and EVERYONE runs like the wind. I guess it's like life, the only way your improve is to meet people that are better players. So now we must decide if she will continue to try out. I am considering continuing her lessons, and letting her play another season of rec, but bump her up to 12 and under. In fact, I am really leaning this direction. If she spends six months improving her skills then she will be a stand out at try outs. In fact, I am really leaning this direction. I am still holding out hope that her last coach, coach Brian will eventually form his own select team. He expressed interest in this, and in bringing Em on. This would be wonderful! I am sad for Em today, but I also think she learned a valuable lesson. In life we have situation that arise that require our full dedication, and sometimes you just get let down.
Jude was pretty fussy when I got home last night so we gave him a dropper of Tylenol. He immediatley calmed down so I know it was his teeth. I am going to keep this short today, but I did want to update.
Here are some pictures for you:
Jude finding his hand.......this is a good thing!
Thursday, July 9, 2009
We also scheduled a hematologist appointment for Jude on 7/30. We are meeting with a in utero and childhood stroke specialist with Cooks. I never knew they had a hematologist that specialized in childhood strokes, but that is encouraging to hear! I think this is a great thing. I went through a time where I think it mattered what caused Jude's stroke, or brain bleed, but now I understand it's necessary. I also followed up with my hematologist to finally find out what this underlying platelet disorder is they discovered after the pregnancy. I guess we will finally know if Jude has the same issue, if he has factor V leiden, or anything else. Our main concern is to make sure Jude doesn't have the potential of suffering another bleed. Seeing how when my platelet problem was discovered the doctor called me a "bleeder", I think it's a high possibility Jude could have the same issue. In addition to the hematologist appointment we also set up a follow up opthamologist appointment for Jude. We know he has gray optic nerves from lack of oxygen which has caused visual impairment, but we don't know the extent of the impairment yet. We have noticed Jude is looking at us more, objects more, and is very interested in bright lights.
In addition to all the above I talked with the Division for the Blind yesterday, and they will be following up on Jude's case. They can provide additional help as needed. Also, the nutritionist said she really feels Jude will only need her attention on an "as need basis", so we will not be setting up a follow up with her right now. So to say the least we have gotten a lot accomplished this week. I would also like to report that Jude is back on schedule regarding eating, and sleeping. When I got home yesterday he had taken over 20 ounces, and eaten vegetables with rice. He did wake up with a seizure this morning reminding us that we are still on the roller coaster. His seizure was quiet, but it was a cluster and lasted about ten minutes. The strange thing is he can smile through these clusters, which is a new development.
I would like to take a minute to share one of the reasons why I have written this blog every single day since April of 2008. Why I share personal highs and lows, and information on Jude. Below is a quote from Hope's mom at www.honkeyplonk.blogspot.com.
" this blog is for other mummies who may find themselves walking an unfamiliar, unchosen path. I was and still am privelidged enough to have followed a blog about a baby called jude. Jude is a few months older than Honk, but with similar diagnosis and prognosis. His mom blogged dàily; the highs and lows. Like Jude, hope was blessed with a good start, and at about 3 months began having seizures. If it wasn't for his blog, I may not have even recognised honk's seizures. I feel that although the path Im on is new, I'm slightly better prepared for the journey thanks to jude's mum. Perhaps then I can be the one to show someone else the way! By the way, though I said this wasn't a path I chose, if someone said they'd show me how to go back to the start and chose another path, I wouldn't! "I am honored, and glad I could help in some way.
Time to go back to work, have a great day!
Wednesday, July 8, 2009
She measured Jude, weighed Jude, and looked him over in general. She explained that you can tell just by looking that our baby is underweight, but just "slightly". We were told that we are doing the right thing by putting rice in every bottle, and that we are now suppose to add a slice of butter to each jar of baby food. This will add extra calories to Jude's food, and she had a few other tips for us too. On top of her advice she left us 4 cases of Good Start Carnation, which is different from what we currently use, but she likes the product. Also, this helps us so much financially, so we are very grateful to her. The nutritionist then when on to tell us that she suggests adding Pediasure to Jude's diet, but not until 1 year.
One year..............wow, Jude is about to be one year. This is both shocking to me, and then on the other hand the last year seems an entire lifetime. Today I created his birthday invitations, and informed friends that the official celebration of Jude's first year of life will be September 5th. After planning this I then took Em to try out for the select softball team she wants to join........only to find out the first tournament they are planning is the beginning of September......ugh. We will manage though.
Yes, Em tried out for a select team, and I liked the coach, and the players. There were 15 girls trying out for positions on this team, but there are only 8 spots. I could tell that Emily played her little heart out, but I could also tell that she was a bit nervous. The coach said that he is looking for "coach able" girls with great attitudes, and the fundamentals down. Emily really wants this, so we can only hope he saw Emily's amazing attitude shining through. I really liked the moms I met, although it's always awkward for me when I meet new people. I am sure I come off like a huge goof, but I guess I am, and so hopefully they are accepting of my true character. I took the opportunity to pass some of Emily's Smile box cards out. I figured if she didn't make the team, they might still remember that her cause needs some support.
Jude is still awake, and I am exhausted. I am about to rock him to sleep, and I will join him in slumber land. Good night all.
After we watched Fourth, and Long I gave Jude a 6 ounce bottle. He fought with me for a minute, and then took the entire bottle without stopping in about 4 minutes!! He then fell fast asleep, and slept through the whole night. I am hoping that we might be getting back on track, but again it's a roller coaster we ride with dips, and turns. I did talk to Jude's neurologist yesterday who confirmed that his lack of eating, and waking up at night can 100% be neurological. He informed me that we needed to watch Jude's weight, and if it started to decline they might look into a temporary G button for him. I do not want that to happen, and honestly I doubt it will. Jude is still gaining weight according to his last pediatrician visit. I have noticed that Jude is also getting a lot more phloem in his throat, but the good news is he coughs, and gets it out. I hope that this is an indication that he will have little problems with aspiration, but I am unsure if it is. I told Mike last night that I have noticed Jude looking directly at me a lot more. Before he would look at me, and seem to get a bit overwhelmed, and turn his head quickly. Now he really looks at me, and will even flash a little grin when he sees me. Another thing we have noticed is that Jude is turning his head to find voices, including turning to the left. He would not turn to the left before because that is his most affected side from the stroke. Jude is also working hard to keep his head up a lot more. Yesterday I found myself getting my hopes up that he will indeed eventually keep his head up, and maybe have a chance to walk. I am curious to know how long it took for other CP babies to learn to keep their head up, if they did. If you have any feedback I would appreciate it.