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Bodhi’s Fight against spina bifida

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Hi,my name is Ashley and during my 20 week ultrasound back in July of 2023 my boyfriend and I found out the most devastating news any parents could receive. We were told our sweet baby boy (Bodhi) would be born with spina bifida along with Arnold chiari II malformation. At this point Thomas and I did our research stayed strong and prayed, we have done everything the doctors told us to do with testing and ultrasounds, we were also told that he does not have clubbed hands or feet which is normally what they see with spina bifida patients this is highly unusual, praise the lord for that. That was back in July of 2023. Fast forward to November 4th of 2023, I had a routine ultrasound to make sure everything is fine with Bodhi and that he is still growing adequately and well, which he is, thank the lord but once again we were thrown for a blow and a loop this time we were told that I might have vasa previa and might have to be hospitalized for the rest of my pregnancy and to come back for a repeat ultrasound. November 14th 2023 I had my repeat ultrasound and we were told that nothing has changed and that I was to be admitted for the remainder of my pregnancy for Vasa Previa the doctors found that there is a blood vessel that is crossing completely over my cervix. This in turn could cause me to bleed out if I would go into labor naturally and lose Bodhi. So Thomas and I then have decided to let me ride out the rest of my pregnancy in the hospital this was no easy decision. If you know me and my family I have two other little girls to a previous relationship. I am asking for help with gas and food expenses for Thomas as this has happened so suddenly and we are tight with funds for having to pay bills, for our house and such also when Bodhi arrives he will have to undergo some major surgeries and we will need help to fund those as well. I normally would not even ask for help like this but I am at a wits end and don’t know what else to do, anything at this point would help, even to share this page and to get mine and Bodhi’s story out there, as there might be other people in the same situation. Thank you all in advance.


UPDATE NOV 21st,2023: I went into spontaneous preterm labor on November 17th, 2023 at 1 am. My obgyn team monitored me over night in hopes of improvement but with out success on improvement in me so they decided to pull Bodhi from me to ensure for a safe and healthy delivery for the both of us. Bodhi Thomas-Lee ward was born on November 17th 2023 at 11:55 am weighing 4lbs 13oz 16 in long. He was immediately transported to CHOP for his back closure surgery. While I stayed at magees to recover. November 21st,2023 Bodhi has now been in the NICU for 4 days and so far he has had his back repair surgery and tons of tests one of which was an MRI that showed he does in fact have Arnold chairi II Malformation. Dr. Abel who has been awesome in following Bodhi and his care updated us and told us that he will be following Bodhi more closely and getting scans of his head weekly to ensure his ventricles aren’t swelling more. In the case that they do Bodhi will need shunt placement. Bodhi today has also shown us that he is more aware of his surroundings by ripping his bubble pap and feeding tube out. He has been more vocal and opening his eyes along with moving his hands more. His pediatrician said that he is making amazing strides and feels as if he will continue down the line. We still have a big joinery ahead of us, with bills and such anything that can still be donated is always appreciated. I just wanted to give everyone an update on bodhi’s progress he has made so far. Thank you all again

️️️️ Update: 12/20/2023:
Bodhi was transferred to the children's home of Pittsburgh in hopes of being able to come home shortly, but still needs support in his feedings just not the setting of a NICU.


Update:12/29/2023
We received a call from the children's home of Pittsburgh while at home due to the fact Sofia his older sister ended up with a stomach ache and there policies are we are not to be around other children or bodhi while a family member is sick. Anywho we received a call from them stating that bodhi had a swallow study done to see where he was at and it didn't come back so good, along with confirmation that he has a tongue tie that could be causing his swallowing issues.So he will be retested in a month to see whether or not he does better or he will need a g-tube placed before coming home, we are hoping and praying this isn't the case.


Update:1/5/2024 Bodhi had his tongue tie snipped and he handled it very well. We're hoping and praying this is the cause of the swallowing issues.


1/17/2024: we have received a call from the children's home of Pittsburgh we were told that Bodhi would be retested on the 29th of this month to see if he needs a g-tube placed or not. He also now weighs over 7lbs, we are so thankful for his weight gain. His nurse practitioner believes that he is doing a little better since the last test but, they are still uncertain if he will pass his swallow study. We are still hoping and praying for the best outcome in this situation. We also at this point have been traveling back and forth from Farrell PA to Pittsburgh Pa as the living situation down at the children's home is not ideal with two other children and we had to move from the Ronald McDonald house to over there to be with Bodhi. Along with everyone in our household getting RSV, yes RSV we just can't seem to catch a break we still have the fundraiser up due to all of the traveling of being able to get bodhi his breast milk that he needs along with bills that are now falling behind being that I am unable to work with bodhi's condition and his dad got laid off recently. I just wanted to also take a moment to thank everyone who has shared and donated so far, you all of helped tremendously and we are so grateful and overwhelmed with all of the help we have received so far.

update 1/26/2024: we got a call at 7pm stating that bodhi is being transferred back over to childrens hospital because he is having a hard time breathing.

Update on bodhi as of today 1/30/24: this morning Bodhi went back for his test and ENT said from their stand point there was nothing they could find. So back to the drawing board, around 5pm today I got a call from Bodhi’s nurse practitioner asking if I received a call from Neurosurgery, I was like no? She began to proceed to tell me that they think bodhi has fluid in his head again and that when they dialed back his shunt that is what caused this. She explained that they might have to relive the pressure in his head and he might have to have another surgery if his MRI comes back bad. He has currently been intubated since early this morning and hasn’t been able to eat since yesterday even though they have resumed his feedings for now. Depending on how this next test goes then they will pull his feedings again. So much has gone on in the past few days that I can’t wrap my head once again at it all. I’m extremely numb and hurt. I don’t understand why all of this is happening but but I know things happen for a reason. We got our apartment back at the Ronald McDonald’s house. I’ll be working down here so we can make ends meet. So for now, I’ll just take it day by day, hour by hour and keep chugging along. I’ll just be happy for the day when we can go home. But for now I’m just happy we are here and bodhi boy is stable that’s all that matters to me and Thomas ❤️❤️❤️

So I know I posted a couple posts tonight of bodhi and his MRI he came back and they tried to excubate him and when they did his stridor breathing came back and we tried multiple different things like me talking to him and patting him, holding him to see if he would calm down and he did a little bit but not enough to where he was comfortable so they had to reintubate him so he was more comfortable. They told me that they are waiting on neurosurgery’s next steps and neurosurgery wanted him excubated to see how he would do on his own but he did horribly so now we’re waiting again. I’m praying and hoping we don’t have to go in for another surgery. ❤️❤️


1/31/2024:
I just wanted to give everyone an update on Bodhi.I received a call this morning around 8am from neurosurgery stating that bodhi will be going into surgery sometime today to correct his stridor breathing they said that this is happening because of his Arnold Chiari Malformation. He told us that his brain stem is pushing on his back bones, so they will have to go in and remove some of that bone to relieve the pressure on his brain stem which is causing fluid build up again. I asked the surgeon if this would "fix" the issue and he was honest and told me that for right now it would fix it, and that later on being that he has the Chiari malformation he might need multiple more surgeries because our brains and bodies are constantly growing while growing up. Please pray for bodhi and us that we can have a smooth surgery and a smooth recovery.

Organizer and beneficiary

Ashley Boulanger
Organizer
Farrell, PA
Thomas Ward
Beneficiary

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