Monday, August 24, 2009

Happy Birthday Lola!!


We had Lola's 1st Birthday Party this weekend. She turned 1 on Aug 12. In some ways, I cannot believe its been a year already. But in some ways, its been a long year. She has been through so much already. She is a very strong little girl and I am so proud of her! The traditional first birthday cake wasn't an option for us, but I wanted to do something special. After talking with her Allergist, I was given the okay to put a little sugar in her pears. So I made a Pear Sorbet type treat. She made a funny face at first, but I am sure because it was so cold. Next thing you know, she is shoving it into her mouth by the fistful. She loved it and it was nice to be able to give her a "treat". We celebrated her special day with family and friends and it was wonderful! She is so blessed to have these people in her life and we are so blessed to have her in ours!! Happy Birthday Lola! I love you so very much!

Sunday, August 23, 2009

Our Latest Concern

I mentioned in previous post that we got a phone call concerning Lola's white blood cell count. Her absolute neutrophil count was low. These make up for over half of your total white blood cell count. So we followed up with her regular pediatrician, since we had her one year check-up anyway. The night before we went, we got another phone call from the Allergist herself, concerned with this low count. She also told me that her and another Doctor had gone over Lola's medical records and noticed that a few months ago, her white blood cell count was low again. I was a little shocked. I can only assume that this was when Lola was pretty sick and that's why it was not something that raised a red flag. But now this has me even more stressed. We went and got more blood work done on Friday, so now we wait. If its still low, they need to find out what could be causing this. I am trying to take this one day at a time and not go overboard. I can also tell you this is NOT something you should Google. She also talked to me about possibly going back to the Neurologist since Lola's shaking has not let up and is a everyday occurrence. I don't know why, but for some reason, I think if her numbers come back low again, that somehow, someway it will end up being related to these shaking episodes. I cant find a connection, but in my mind, there must be one. Please remember I am very open to any and all ideas and suggestions. That's a big reason for me blogging. Maybe just maybe someone will read this and think of something that I have not? But for now, I am waiting on these results and praying. Lots and lots of praying.

IgE Allergies




This was our curve ball at our last Allergist apt. For some reason, I just was not expecting positive results for true food allergies. But we got them, and so now I am trying to educate myself on something I pretty much knew NOTHING about. So I have been reading my new book Food Allergies for Dummies. Its pretty good so far. And as if I didn't have enough things to tote around in a diaper bag for 2 kids, now we have to carry 2 epi-pens and benadryl. Obviously something much better to have in case. Praying we never have to use it, but having it is a nice piece of mind.

Tuesday, August 11, 2009

Friday, August 7, 2009

Trying again, not sure what happened with last post

Lola had her Endoscopy and biopsies today. But last night, we had a bit of a scare. I got a call from a Doctor(none of her own) who had read her blood lab results and was concerned with her white blood cell count. I called the GI doctor last night and he assured me it was okay and we would continue with the procedure as planned. Getting a phone call at 8:30 about your daughters white blood cell count being low is NOT something you ever want. Needless to say sleep was not an option last night and 5:15 came pretty fast. So we went to the hospital got checked in and Lola knew she was not going to have a good day the minute we walked into that building. I don't care what anyone says, she KNOWS that place. She clung tightly to me, giving VERY nasty looks to any nurse or doctor that so much as glanced her way. They did vitals and now it was time for the IV. I did tell them ahead of time that she was a tough stick to get. So sure enough the first nurse tries to no avail. She tried twice. Then the next, 3 times. Mind you, we are holding her down and she is screaming terrible, terrible screams the entire time. They tried both feet, both arms, hands. They sat and dug into her tiny body with needles finding nothing. They tried different size needles. Nothing. They finally called in the special "IV Team". They came in tried and asked if they could put the IV into her head. We refused. Okay I shouldn't say flat out refused, but we told them it needed to be a LAST resort. Finally, they got it. THANK GOD. This was over an HOUR of digging into my baby girl with needles. She looks like a pin cushion now. The black and blue is pitiful against her very fair skin. Its always difficult to watch your baby go through all that, but somehow, I manage to stay strong. I just know that if I am not strong for her, it will only make it harder on both of us. I told them I wanted to be with her until the last possible minute. Its probably because they felt bad about the IV, but they actually let me go back with her and put her under in my arms. Its actually nice to see her become so peaceful after all of that stress. I lay her on the table and kiss her little forehead then leave the room. Okay they pretty much kicked me out, but whatever. And now we wait. The wait was short. The doctor came in and told us what he found, or in our case, didn't find. She had no damage! I quickly thanked God. Of course the biopsy samples(he took 8) are what need to be examined for the diagnosis of EE(eosinophilic esophagitis). For some reason I am thinking were are not going to be getting this diagnosis. I will be praying a lot this weekend. We should get results the first of next week. We waited a while longer and they finally called us back to our little stoned baby girl! She looked so beautiful when I walked into the room and saw her so snug in her hospital bed. Again, I took a moment to thank God. She tried to sit up once she spotted Mommy and Daddy. She sat up, smiled and tipped right over to the side! It was pretty funny! Of course we had another small scare. The nurse told us they were about to give her some Apple juice. My husband and I both shouted, NO!! Yet another reminder of how scary food allergies can be. Its all over her charts and yet, they thought nothing of even asking first. Now, we aren't sure if it would even be a problem but we aren't prepared to take that chance. She enjoyed some pedialyte then threw the empty bottle onto the floor. She did well, so they let her have a bottle. I had it ready and she appreciated that with every sip! Everything went well, so we went home and she is 120%. They always tell you she may be sleepy for the rest of the day blah blah blah. Its business as usual! She was happy to be home and with her brother. A reminder to her that her brother isn't so bad after all! And now we wait. Hoping for results on Monday. I will update. Again, I cannot thank our family and friends enough for the thoughts and prayers. They are sooo very appreciated!

My Poor Little Pin Cushion







Lola had her Endoscopy and biopsies today. But last night, we had a bit of a scare. I got a call from a Doctor(none of her own) who had read her blood lab results and was concerned with her white blood cell count. I called the GI doctor last night and he assured me it was okay and we would continue with the procedure as planned. Getting a phone call at 8:30 about your daughters white blood cell count being low is NOT something you ever want. Needless to say sleep was not an option last night and 5:15 came pretty fast. So we went to the hospital got checked in and Lola knew she was not going to have a good day the minute we walked into that building. I don't care what anyone says, she KNOWS that place. She clung tightly to me, giving VERY nasty looks to any nurse or doctor that so much as glanced her way. They did vitals and now it was time for the IV. I did tell them ahead of time that she was a tough stick to get. So sure enough the first nurse tries to no avail. She tried twice. Then the next, 3 times. Mind you, we are holding her down and she is screaming terrible, terrible screams the entire time. They tried both feet, both arms, hands. They sat and dug into her tiny body with needles finding nothing. They tried different size needles. Nothing. They finally called in the special "IV Team". They came in tried and asked if they could put the IV into her head. We refused. Okay I shouldn't say flat out refused, but we told them it needed to be a LAST resort. Finally, they got it. THANK GOD. This was over an HOUR of digging into my baby girl with needles. She looks like a pin cushion now. The black and blue is pitiful against her very fair skin. Its always difficult to watch your baby go through all that, but somehow, I manage to stay strong. I just know that if I am not strong for her, it will only make it harder on both of us. I told them I wanted to be with her until the last possible minute. Its probably because they felt bad about the IV, but they actually let me go back with her and put her under in my arms. Its actually nice to see her become so peaceful after all of that stress. I lay her on the table and kiss her little forehead then leave the room. Okay they pretty much kicked me out, but whatever. And now we wait. The wait was short. The doctor came in and told us what he found, or in our case, didn't find. She had no damage! I quickly thanked God. Of course the biopsy samples(he took 8) are what need to be examined for the diagnosis of EE(eosinophilic esophagitis). For some reason I am thinking were are not going to be getting this diagnosis. I will be praying a lot this weekend. We should get results the first of next week. We waited a while longer and they finally called us back to our little stoned baby girl! She looked so beautiful when I walked into the room and saw her so snug in her hospital bed. Again, I took a moment to thank God. She tried to sit up once she spotted Mommy and Daddy. She sat up, smiled and tipped right over to the side! It was pretty funny! Of course we had another small scare. The nurse told us they were about to give her some Apple juice. My husband and I both shouted, NO!! Yet another reminder of how scary food allergies can be. Its all over her charts and yet, they thought nothing of even asking first. Now, we aren't sure if it would even be a problem but we aren't prepared to take that chance. She enjoyed some pedialyte then threw the empty bottle onto the floor. She did well, so they let her have a bottle. I had it ready and she appreciated that with every sip! Everything went well, so we went home and she is 120%. They always tell you she may be sleepy for the rest of the day blah blah blah. Its business as usual! She was happy to be home and with her brother. A reminder to her that her brother isn't so bad after all! And now we wait. Hoping for results on Monday. I will update. Again, I cannot thank our family and friends enough for the thoughts and prayers. They are sooo very appreciated!

Tuesday, August 4, 2009

So we had Lola's GI apt today and this should be the part where I talk about what happened and maybe give some answers to some questions. But, I got nothin. Okay maybe not NOTHING but not much. So 1 month ago, we had a diagnosis, a plan, something to go by. Now, we have none of that. We have gone 1 step forward and now 2 steps backwards. Its hard to explain, but whatever it is, I can and will handle it but not knowing is harder than anything. Yesterday we went and got her blood work done. 5 vials of blood and she didn't shed a tear! Amazing. We are waiting on those results. Today's apt was basically talking about where to go from here. Friday she goes in for an Endoscopy. If it looks okay, we will feed her as normal as possible (avoiding her reaction foods) and go ahead with another endoscopy in 3 weeks. Right now she is doing great. Of course I am anxious for Friday. Anytime she has to be put under is stressful. Any thoughts and prayers are appreciated! I will update Friday. Thanks!

Saturday, August 1, 2009

Lola's Day Off

Today Lola had a much needed day off. No poking, no pinching, no doctors and no nurses. Wait, I take that back, there probably was a bit of poking and pinching from her big brother. But it was a nice break from her 2 tough days. I told myself that I was going to relax today and try not to worry about things. HA!!! Well it started out nice. So about 2pm today, we were all home hanging out, my husband included, when Lola had a shaking episode. This was actually the first significant episode that my husband has witnessed. I was actually really really happy to have someone other than me see this. As crazy as it sounds, I got a sense of relief. And I think it also made it more "real" to him. Not that he didn't think it was an issue before but certainly seeing it makes it different. So then at about 7:30pm she has yet another, even longer episode. Now I am talking a few seconds here, but I assure you that seconds feel MUCH longer when you are watching your daughter shake involuntarily. This time, after the shaking, she froze up for about 2 seconds after. My husband has now seen 2 in one day. So while its nice that he has finally seen one, this also means they are happening more often. And that's definitely not a good thing. Of course these things always happen of the weekend when the Doctors aren't in. Not really, they happen all the time but I am more stressed just knowing they aren't as easy to reach. Obviously we are documenting the details of these episodes and I will be in touch with the Doctors on Monday. We have our GI apt on Tues but she also needs blood work and that will include checking to see if she has a possible electrolyte imbalance that could cause these. Soo other than that she has been in great spirits today. I also gave her the second hearty, okay not hearty 1 teaspoon of carrots today. She goes well eating them. I also feel the need to add that her smile can light up any room and I cant look at her without smiling!!